Posts belonging to Category 'Seroquel Patient Info'

what i'd like

Question:

On 17 Aug 1998 03:00:37 GMT, hypo…@aol.com (Hypoint) wrote: Does anyone know what is required to become licensed as a naturopathic doctor in the states where it is licensed? Not for certain (but I can probably find out more if you really want to know).  I had a friend whose husband was an RN and went on to get his Naturopathic Doctor’s license.  I believe it took at least two more years of education, and possibly was as long a course of study as for M.D.’s.  There was a college in or near Portland, Oregon, that he went to.

Lianne, Thanks.  That would be great.  Susan quoted what the article had about it, but anything else would be appreciated. Wendy hypo…@aol.com

Response:

pa…@lajollashores.com <trimmed for brevity

Thankyou to the person who replied to me last time though about

where

to ask about biest. Patsy

Sorry Patsy. I didn’t reply because I have no idea what Biest or Triest are – still don’t. I’ve used a whole range of search tools and have not been able to find any reference to these as drug names. It might help to know a little more – are there any other names on the drug packaging ? what country are you in ? — Talia ta…@wgd.globalnet.co.uk

Response:

On Sat, 15 Aug 1998 02:21:01 +0100, "talia" – Hide quoted text — Show quoted text -<ta…@wgd.globalnet.co.uk

wrote: pa…@lajollashores.com <trimmed for brevity Thankyou to the person who replied to me last time though about where to ask about biest. Patsy Sorry Patsy. I didn’t reply because I have no idea what Biest or Triest are – still don’t. I’ve used a whole range of search tools and have not been able to find any reference to these as drug names. It might help to know a little more – are there any other names on the drug packaging ? what country are you in ? — Talia ta…@wgd.globalnet.co.uk

I think the problem finding information is that this is not a drug product per se. It is the generic name for a  formula for a custom made up preparation from a compounding pharmacy. The word bi est just means two estrogens. LIkely a doctor writing out the prescription would write out the amounts of estrogens rather than use the word bi est. I could be wrong, I am not that familiar with compounding pharmacies  especially in the US. Tri est is also called triple estrogen. Really I think these are prescribed because women want to take the safer estriol alone, but the compounders/physicians/naturpaths know that unless a women cannot take the other estrogens for some reason they need to add a stronger estrogen to the mix in order for it to <work

The critics of  bi est and tri est would say that the addition of estradiol even as only 10% of the estrogen mix completely defeats the purpose of taking the estiol in the first place. Just sort of some things I’ve gleaned, no sources. I welcome comments. (I’m not certain but I think bi est is an estradiol/estriol combination without the estrone) If bi est or tri est were sold as brand name ready made up products wouldn’t they need to have testing and FDA approval in the US? Is estriol available as a product in the UK Talia? Kathryn droz…@direct.ca – Hide quoted text — Show quoted text –

Response:

Patsy has asked about ‘bi-est’.  So far no one seems able to post any information on it.  I have found information on tri-est in the book "Natural Woman, Natural Menopause" by Marcus Laux, ND and Christine Conrad (Harper Perennial 1998).  I am going to basically quote from page 77 of the book: The Tri-Est (E1, E2, E3) Formula "Tri-est … is one part estradiol to one part estrone to eight parts estriol. It was developed by Jonathan Wright, MD, who has been prescribing estriol since the 1980s.  By adding the smaller amounts of the ’stronger’ estrogens — estradiol and estrone — to the formula, symptoms such as hot falshes and night sweats could be alleviated more quickly, while at the same time giving a woman the potential protection against breast cancer of the estriol.  …" "We [the authors] believe that using a tri-est formula is good commonsense for women who want or need to use an estrogen product.  Unlike Premarin or synthetic estrogens, it contains the three major estrogens (E1, E2, E3) in a balanced ratio that is more similar to a woman’s own ratios.  … Using tri-est, you are able to influence a greater numberof estrogen receptors with safer, more benigh estrogen.  While there is a great deal of documentation on the tissue-stimulating effects of Premarin and estradiol alone, we know of no documentation that shows that estriol taken appropriately stimulates endomentrial (uterine) cell growth, a precancerous condiiton." Laux goes on to say that "the only drawback to using tri-est is that it may not be a strong enough formula for some women at certain times, such as immediately following a hysterectomy."  He also recommends taking it with progestrone.   Stop the Press:  Just paging through the book and on page 117 there is a reference to a "bi-estrogen product" which is 20% estradiol and 80% estriol. It is listed under the protocol for peri-menopause women.  The book includes suggested protocols (usage) for peri-menopause, surgical menopause, menopause, women at high risk for cancer and breast cancer survivors, and post-menopause. Hope this is helpful to you, Patsy.   susan

Response:

Susan wrote:

Patsy has asked about ‘bi-est’.  So far no one seems able to post any information on it.  I have found information on tri-est in the book "Natural Woman, Natural Menopause" by Marcus Laux, ND and Christine Conrad (Harper Perennial 1998).

What’s an ND? Is that a typo for MD, or does Laux hold a degree in non-mainstream medicine? Regards, vlhb…@aol.com

Response:

- Hide quoted text — Show quoted text -vlhb002 wrote:

Patsy, I’m glad you’re finding the web site helpful and I’m very sorry you haven’t been able to find anything on biest/Bi Est or however it is spelled and capitalized. I don’t know what the stuff is, either? Did you get it at a regular pharmacy? If so, you should have gotten a patient info sheet with it. If you didn’t get one, or if you have lost or discarded it, perhaps your pharmacy will give you another copy. At the very least, it should give you the "real" name of the drug you’re taking, and then you can look it up in the Physician’s Desk Reference — there’s probably a copy at your library. You can also post whatever identifying information you’ve found to this newsgroup, and perhaps we can help you sleuth out some more info.

Found an entry in glossary for the menopaus email list. ———- Tri-Est – natural estrogen: The standard Tri-Est is 80% estriol, 10% estradiol, and 10% estrone, other strengths are available. Comes in transdermal (cream) and pill form. The recommended Tri-Est *cream* dose is 2.5mg per day (1/4 tsp) ———- Also found a discussion on powersurge with a compounding pharmacy.  

Just Wondering …..

Question:

On Thu, 19 Mar 1998, M.A.T. wrote:

non-profit. Also – my husband recently met the former head for the state chapter of a well-known and respected national health "support and information" association — and this person was also a former high level employee of a major pharmaceutical company! And of course there are frequent complaints from this group about posters who are "direct marketers" in disguise, so anything is possible! MAT

        Read the Wall Street Journal a few days back when it hit the front page about the incestuous relationship and ethical problems of the "researchers" also being on the payroll of the drug companies. It finally made the WSJ because the drug testing being criticized was testosterone so men were finally starting to wake-up to this common practice.         The medical market place changed dramatically after the popular media got a hold of Tagamet and patients started demanding these drugs from their doctors, instead of the exploration about them coming from the doctors to the patients. The market place has never been the same and a system of media leaks with misleading sound bytes now drives the market.         For the best investigative books on this topic read anything by Thomas Moore (Deadly Medicine; Heart Disease) He combs the FDA hearings and tracks down the players. And you learn a lot about the politics of what is really going on in the market place. An excellent book on how this applies to the decades of menopause marketing is found in "The Menopause Industry"  by Sandra Coney. shelly

Response:

I just had a wild thought – do you think the Pharmaceutical Companies monitor ng’s like this? If they don’t, they probably should just from a smart marketing point of view. But – they could also post messages under the guise of a fellow support group person. It is actually very unusual for me to think in terms of "conspiracies", but I have become aware recently that some (perhaps many) of the new and growing number of "grass roots citizen groups" are in fact front groups for special interests – both profit and non-profit. Also – my husband recently met the former head for the state chapter of a well-known and respected national health "support and information" association — and this person was also a former high level employee of a major pharmaceutical company! And of course there are frequent complaints from this group about posters who are "direct marketers" in disguise, so anything is possible! MAT

Response:

MAT,  It’s possible for anyone posting to Newsgroups to be other than as they are representing themselves.  This is why it is always good to check on the other sources that are recommended in our posts.  It isn’t necessarily a conspiracy as much as it is just big business as usual.  They advertise, they write articles in magazines and newspapers, and why not infiltrate the Internet?  We’ve had sterling examples of it on this newsgroup in the past. We haven’t uncovered a major drug company here, but some small fry looking to get a foot in the door.  It was slammed on them too ;-) You’re sounding more and more like a crone, MAT.  Will you be sending your picture to tishy? fiona – Hide quoted text — Show quoted text -M.A.T. wrote in message …

I just had a wild thought – do you think the Pharmaceutical Companies monitor ng’s like this? If they don’t, they probably should just from a smart marketing point of view. But – they could also post messages under

the

guise of a fellow support group person. It is actually very unusual for me to think in terms of "conspiracies", but I have become aware recently that some (perhaps many) of the new and growing number of "grass roots citizen groups" are in fact front groups for special interests – both profit and non-profit. Also – my husband recently met the former head for the state chapter of a well-known and respected national health "support and information" association — and this person was also a former high level employee of a major pharmaceutical company! And of course there are

frequent

complaints from this group about posters who are "direct marketers" in disguise, so anything is possible! MAT

Response:

On Thu, 19 Mar 1998, M.A.T. wrote:

I just had a wild thought – do you think the Pharmaceutical Companies monitor ng’s like this? If they don’t, they probably should just from a smart marketing point of view. But – they could also post messages under the guise of a fellow support group person. It is actually very unusual for me to think in terms of "conspiracies", but I have become aware recently that some (perhaps many) of the new and growing number of "grass roots citizen groups" are in fact front groups for special interests – both profit and non-profit. Also – my husband recently met the former head for the state chapter of a well-known and respected national health "support and information" association — and this person was also a former high level employee of a major pharmaceutical company! And of course there are frequent complaints from this group about posters who are "direct marketers" in disguise, so anything is possible! MAT

        I would only hope the drug companies do read this newsgroup. Seeing the subtle changes in the drug ads as they are starting to back off and equivocate makes me wonder if, in fact, they are reading this.  At least in the last yahoo Premarin ad in Parade mag, they put the product warning label following the drug ad, instead of deceptively before it like their first scam attempt.         Did they do that because we on asm howled over that bit of blatant trickery? But now, they put a "patient info" form instead of the full FDA text. So gain a little, lose a little.         Plus some of the newer drug competitors are starting to go for the primal hook of abandonment and infidelity threats if you don’t take their drugs (Mirabella mag) so they must know from reading many women’s hidden agendas why they really want to take these drugs.  This was also big on the alt.support.menopause.husbands for a while. "You will be a dried up old hag and your husband will leave you if you do not daily take a deadly hormone cocktail of estrogen, progestin and testosterone." Heavy.         If you read the drug ads carefully and parse them out, they are pretty pathetic on substance and very looooooooong on image …again going for the primal hook of the promise of eternal youth and beauty …just like the bad old days when the drug companies funded the trash book "Feminine Forever" in the 1960’s.         Read them and weep. They are drugs. They have a place of efficacy in a few limited situations and are especially appropriate for post surgical removal of hormone producing glands. But this is not by a long shot how they are being …pushed … on the public today. Including men buying into the irritation that all of a woman’s "problems" would be solved by taking these little pills. shelly

Response:

evoked potentials

Question:

so he wants to set me up with evoked potentials. I really didn’t

understand

him the first time around, so I was hoping someone here could enlighten

me.

what they do what they mean??  Appreciate any and all responses.  Thanks

Evoked Potentials measure the time it takes for the nervous system to transmit impulses.  It is used to measure the amount of damage to the nervous system.  When I was dx’d (now ten years ago, whew, how time flies by) they hooked electodes to my left hand and to my head.  The ones on my hand caused my thumb to twitch.  The ones on my head measured the time it took for the thumb twitch impulse to hit my brain.  Hope this helps

Response:

Good description Sharon.  It’s important to relax as much as possible when  having evoked potentials done so that there’s no "artifact" as they call it.  Artifacts are caused by tensing the muscles and can mess up the results of  this test.    Lisa

Response:

        Thanks Sharon that explanation was much clearer.  I also wanted to tell you that your Mother and you are very much in my thoughts and prayers. At 09:09 AM 11/7/97 -0500, you wrote:

an evoked potential measures the response time between a message sent to the brain to activate a muscle and the time it takes the muscle to actually do the activity – if the response time is too slow or even sometimes too fast then that means the motor neurons are firing at the wrong rate and it can help diagnose m.s. or rule out other problems – does this help?

                /_____/        ==-=-/  o   o  =-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=        === ( ==  ^  == )         ===There is always a little piece         ===   )        (        ==         of heaven in the disaster-area!         ===  (          )        ===-( (  )    (  ) )               Luv Susan -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-== ==            (__(__) _(__)__)       s_guzie…@conknet.com

Response:

i’m glad you liked my explanation – thanks for the prayers – Hide quoted text — Show quoted text -

———- From:  Susan Guziejka[SMTP:s_guzie...@CONKNET.COM] Sent:  Wednesday, November 12, 1997 12:38 AM To:    MSLIS…@techunix.technion.ac.il Subject:       Re: evoked potentials        Thanks Sharon that explanation was much clearer.  I also wanted to tell you that your Mother and you are very much in my thoughts and prayers. At 09:09 AM 11/7/97 -0500, you wrote: an evoked potential measures the response time between a message sent to the brain to activate a muscle and the time it takes the muscle to actually do the activity – if the response time is too slow or even sometimes too fast then that means the motor neurons are firing at the wrong rate and it can help diagnose m.s. or rule out other problems – does this help?                /_____/       ==-=-/  o   o  =-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=       === ( ==  ^  == )         ===There is always a little piece        ===   )        (        ==         of heaven in the disaster-area!        ===  (          )       ===-( (  )    (  ) )               Luv Susan -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-== ==           (__(__) _(__)__)       s_guzie…@conknet.com

Response:

        Hi all, I haven’t been on the list much, will be getting a new computer soon that will accept dictate.         I saw my neuro today and he was concerned at how my left leg drags so he wants to set me up with evoked potentials. I really didn’t understand him the first time around, so I was hoping someone here could enlighten me. what they do what they mean??  Appreciate any and all responses.  Thanks                 /_____/        ==-=-/  o   o  =-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=        === ( ==  ^  == )         ===There is always a little piece         ===   )        (        ==         of heaven in the disaster-area!         ===  (          )        ===-( (  )    (  ) )               Luv Susan -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-== ==            (__(__) _(__)__)       s_guzie…@conknet.com

Response:

What is TPMS?  A new one on me. Kathi

Response:

HI, I was just Dx’d n May and started right away on Avonex, 3 weeks later. My neuro basically left the decsion up to me, what I wanted to take.  I based my decision on only having to do a once a week shot. But I’m getting ahead of myself now.  I had a very bad flare-up which in turn got me the dx of MS.  Because of the fact that I have lesions both in the brain and spine I decided to go on the meds right away, in hope that it would prevent &/or lessen the severity of a second flare-up.  I have had a second flare, am in it now, but it is so minor in comparison to the other one that I’m thinking that it is because of the Avonex working.  I hope this has helped some.   Wishing you welcome. Kathy V.

Response:

Honestly.. I would start one of the ABC’s.  I started out with numb toes.. then ON and now have progressive MS just 18 months later.  Read the studies.  Do a medline search on optic neuritis.  Even order the articles if you need to. Read as much first hand stuff as possible.  Good luck j j who is really jan, janice or jkl

Response:

Hi Paul, Can you tell me what TPMS is?  I don’t know if I’ve heard it before and just can’t remember, or what.  My brain is in the "shut down" mode right now! :o ) Tee (PPMS) "Paul Jones" <Paul_Jo…@btinternet.com

wrote in message

news:3A1BDD50.81B05873@btinternet.com… <snip

What helps RRMS, helps benign MS. The terms "benign" and | "malignant" describe the disease severity and are not disease forms in their own | right. I think that RRMS, SPMS, PPMS and TPMS are the only major recognised disease | forms (excepting the MS variants like Devic’s and Marburg’s)

Response:

TPMS stands for transitional progessive MS. I wrote things wrong before before – sorry. I meant to say PRMS (and not TPMS). PRMS is progressive relapsing MS and . I’m looking it up now. The four types defined by Lubin and Reingold are RRMS, SPMS, PPMS and PRMS. PRMS is progressive from onset with superimposed relapses/remissions. TPMS is yet another type proposed by some neuros including my consultant DH Miller. It’s defined by a "progressive course beginning many years after an isolated bout". [Gayou A, Brochet B, Dousset V 1997. "] "Ten percent of patients with MS have a Progressive course from onset with nohistory of relapses or remissions. A smaller subgroup follow a similar Progressive course but have a single relapse at some point (Transitional/Progressive [TP] MS)." [Stevenson VL; Miller DH; Rovaris M; Barkhof F; Brochet B; Dousset V; Dousset V; Filippi M; Montalban X; Polman CH; Rovira A; de Sa J; Thompson AJ 1999] If you weren’t confused before, you probably are now :-) Take care, Paul – Hide quoted text — Show quoted text -Tee wrote:

Hi Paul, Can you tell me what TPMS is?  I don’t know if I’ve heard it before and just can’t remember, or what.  My brain is in the "shut down" mode right now! :o ) Tee (PPMS) "Paul Jones" <Paul_Jo…@btinternet.com wrote in message news:3A1BDD50.81B05873@btinternet.com… <snip What helps RRMS, helps benign MS. The terms "benign" and | "malignant" describe the disease severity and are not disease forms in their own | right. I think that RRMS, SPMS, PPMS and TPMS are the only major recognised disease | forms (excepting the MS variants like Devic’s and Marburg’s)

— http://www.btinternet.com/~ms_pages/

Response:

The message <8vhgoq$uk…@newsg2.svr.pol.co.uk

  from  "Roarke" <roa…@langleyirrv.freeserve.co.uk

contains these words: At least in Britain, evoked potentials I believe is no longer done. May be wrong, but that’s what we were told. Mainly cos better indicators are available, such as MRI.

Ummm…. I had evoked potentials done when I was diagnosed in 1997 in Britain. These only showed abnormalities in the optic nerve. I had ON but no other symptoms. My MRI was uneqivocal though. My spinal fluid was free of oligoclonal bands. — Helen D. Vecht: helenve…@zetnet.co.uk

Response:

Roarke wrote:

At least in Britain, evoked potentials I believe is no longer done. May be wrong, but that’s what we were told. Mainly cos better indicators are available, such as MRI.

Not sure about that. I had a VEP test in Britain last year. I think they are still useful because they show slowed nerve impulses down the optic nerve which result from lesions that might not show up on MRIs and may not be visible on the macular through an opthalmoscope because they are further back along the optic nerve (retrobulbar optic neuritis). That sounds like what Kristen has got. I guess other EPs are useful for the same reasons. Take care, Paul http://www.btinternet.com/~ms_pages/

Response:

Paul wrote:

::::MRIs can often (but not always) show the lesions causing retrobulbar ON, but it’s important whether yours also showed any "silent" lesions in regions apart from the optic nerve. Silent lesions are ones that don’t have associated clinical symptoms. I should ask your neuro this – if you have other lesions it would help with the dx.::::: My neuro told me I had other lesions, but no clinical symptoms other than the ON. We went over recent history, and there was an incident with severe vertigo, but that was a few months prior, so it may or may not have been an MS incident. (I haven’t been diagnosed yet) What do the silent lesions mean? Are they precursors? Also, about ON…I  have a family history of that, my mother and an aunt (mother’s sister). Same eye for all of us. In my mother and myself, we both have lazy eyes, and thats where it occurred. My mother’s ON happened 15 years ago with no further symptoms of MS. My aunt’s happened 5 years ago. I am not aware of any symptoms that she has had. The only relative I know to have had MS was a great (great great?) aunt who was diagnosed when she was 60. In my mother’s case, she was told that it was very possible she could have MS, her opthalmologist seems certain to this day she has it. Mother says "Stupid doctors, what do they know?" I just feel like a detective, trying to fit peices together. I know there is a hereditary link there, but how strong is it? I am the only one of my mother’s children to have inherited her lazy eye, and to get ON. Tracy (Just call me Dick Tracy hehe)  

Response:

"Tracy B." wrote:

What do the silent lesions mean? Are they precursors?

Only a small number of lesions seem to be tied into clinical symptoms. I’m not sure what you mean by "precursors". Just a bit of idle speculation based on no evidence whatsoever :- I guess these lesions are either not serious enough to cause problems or somehow the brain works around them. A lot of computer hardware has built-in "redundancy". That means when a bit fails, another bit will take over seemlessly. Perhaps the brain is constructed in the same way, so that a lesion in one region has no effect until the bit that is covering for it gets hit as well.

Also, about ON…I  have a family history of that, my mother and an aunt (mother’s sister). Same eye for all of us. In my mother and myself, we both have lazy eyes, and thats where it occurred. My mother’s ON happened 15 years ago with no further symptoms of MS. My aunt’s happened 5 years ago. I am not aware of any symptoms that she has had. The only relative I know to have had MS was a great (great great?) aunt who was diagnosed when she was 60. In my mother’s case, she was told that it was very possible she could have MS, her opthalmologist seems certain to this day she has it. Mother says "Stupid doctors, what do they know?"

My neuro told me that not only was there a hereditary element to MS but there was also some evidence that disease severity is also hereditary. That could be good news for you. Interesting that you should have a lazy eye as a child. I did as well. I wonder whether that’s just co-incidental. I think vertigo is quite common in MS. Take care, Paul http://www.btinternet.com/~ms_pages/

Response:

What do the silent lesions mean?

the way my neurologist explained this to me leads me to understand that the affected nerves weren’t associated with anything for which an interruption or blip in nerve reception would cause a symptom.  i don’t know what exactly that might be…your spleen, maybe? Kristen

Response:

On 22 Nov 2000 18:36:19 GMT, kmagn…@aol.comatose (KMagninH) wrote:

So what would you do in my shoes?  Start taking a drug and hope that it’s the right thing for or wait for further "proof" that it’s MS?  

It is now believed that damage to the nerve axons is occurring even during symptom free periods.  This why it is recommended that you start on one of the ABCR drugs as soon as the diagnosis is made.  Significant damage to the axons cannot be repaired. — Spelling and grammatical errors are deliberate to catch copyright violators.

Avonex info wanted, Please!!

Question:

I am in the hospital at time from another attack and the doctors are saying the would like to suggest Avonex instead of Betaseron because of the side effects that it doesn’t have, the convience to take medication and it has been proven that attacks are cut by 30% to 40%.. Does anyone that take this medication give me alittle information on their experiences?

Response:

Hi Kenny, I read what you wrote in the news-group(glad you got on it, welcome!) and I took the liberty of sending you what Margaret Brawley who was just given Avonex had to say about it, in case this was already purged from the news-group. She seems to have an alright reaction to it so far. You do have to remain aware that it does not make the symptoms better, but does seem to make us not get worse so fast, an important thing for you, because although more women get MS than men, from what I have discovered here and elsewhere on the ‘net’, men seem to have a rougher time of it. I hope this will help. (((((((((((((((((((((((Hugs)))))))))))))))))))))))))))))))) To: Multiple recipients of list MSLIST-L <MSLIS…@TECHNION.TECHNION.AC.IL

Subject: Re: Avonex – Got My First Shot! (long) From: Margaret Brawley <Margaret_Braw…@MILLIPORE.COM

Date: Sat, 8 Jun 1996 09:38:09 EDT Hi, everyone – I’m so pleased to be able to confirm that Avonex is a remarkable improvement over Betaseron  (at least for the first injection). I got my first dose Thursday around noon in my neuro’s office. He had me hang around for a half hour or so (I’m his first patient on the drug) to see if I might have an adverse reaction. In fact, I felt nothing. I continued to feel ‘normal’ – whatever that is- until about 8 hours later when the muscle aches and fevery/chilly stuff started. I never took my temp but, compared to my first Betaseron shot (BS caused me an immediate bad reaction, from the injection site to shaking chills, horrible joint and muscle aches – real bad flu-like stuff) the Avonex experience has been wonderfully unremarkable. My only complaint is a persistant headache that I have had off and on for 4 days. In other words, I walked into my neuro’s office with a migraine and the Avonex neither made it better nor worse. This is probably placebo effect as much as Avonex but I FEEL better. Notably, I’ve been less tired or dare I say, I have more energy? This has been a very bad winter/spring for me – seizure-like stuff, trigeminal neuralgia, bad optic neuritis in BOTH eyes plus the usual bladder, numbness, clutziness, etc- so I’m admittedly somewhat desparate for even a little improvement. Watch out world!! But anyone considering Avonex should be reassured. Read BJ’s description of the drug – she’s right – Biogen made this protein in a form that’s almost identical to what we all naturally produce. So to summarize, Avonex -was easy to get – my neuro wrote me a  prescription (after he’d been sent information from both NMSS and Biogen – clearly explained patient info was included for me to read – Biogen or your local MS chapter I believ can send you this stuff to read ahead of time too) -insurance covers Avonex – you can check with your company yourself or Biogen can call for you -Medicare probably will cover if you have a physician administer the injection-not sure as I’m no longer on Medicare so you’ll have to confirm -you can pick how you want the drug dispensed – pick up at your pharmacy or delivered to your home. Note that like Betaseron, this stuff must be kept refrigerated. – Avonex is supplied in a complete kit. It still must be made up into an injectable solution. But,everything is included for each dose in a neat package – drug, diluent, syringe, MicroPin for adding diluent to drug, needle for injection, alcohol wipes, band-aid. Cool. -Avonex is an Intramuscular -IM injection (Betaseron was subcutaneous). While anyone who’s uncomfortable with the deeper IM injection, it’s actually LESS painful than subcutaneous – believe me – I still have red spots from BS on my abdomen and I stopped taking it a year ago. For anyone who wants to self-administer, a doctor or nurse can train you (or even a pharmacist can demo) You can practice on an orange or similar skin model. -Biogen recommends taking Tylenol/acetomeniphen before an injection and for the first 24 hrs after. I’m not normally a Tylenol fan – it doesn’t do much for inflammatory disease symptoms – but it seemed to help. So, every Thursday will be Avonex-day. So nice not to have to bother with the every other day routine. Sorry this is such a tome, but I believe that this is a drug worth trying. Maybe we can say so long to the ‘no pain, no gain’ days of MS treatments! Hugs, hoorays and moments of happiness to all – you all have really helped me to cope and continue fighting this disease – Thanks – Marg Who happily is commuting to work a few days a week – mostly to get her computer fixed (maybe it has rr ms too!)              B.J.        M.S.- THE DISEASE OF USED TO BE.             *HUGS*   For those looking for first-hand accounts of experiences with MS, try:           http://www.pobox.com/~mattl/ms         and don’t forget to leave your experiences too!     Take charge of your health-care, you are the boss and         you are the one the meds./treatments affect. "Fool some one once and they’ll be foolish for a day, but teach them to fool themselves and they’ll be foolish for a lifetime." R.J. (a.k.a Michael Fry)

Response:

Which injectable???

Question:

I also thought there were studies that they did not impact MS in the long run.  IE slow down and or speed up progression.  Does anyone recall seeing a medical study that concluded that? — Laura "jdgargoyle" <jdanel…@uspower.net

wrote in message

news:ajldje$1bgoqg$1@ID-85198.news.dfncis.de… – Hide quoted text — Show quoted text -> rob, you wrote: > "Its no mistake that Solumedrol, > Prednisone, Cortisone, etc., help with exacerbation’s" > Um……sure they do for a while that is, sometimes, usually…….but NOT > always. > — > Take Care : ) > JulieD > "Stef Duncan" <robandstef2…@earthlink.net

wrote in message

> news:tVi79.8016$I6.623791@newsread1.prod.itd.earthlink.net… > | Just a quick note, without replying to your earlier response.  With the > help > | of antibiotics the body can rid itself of mycoplasmas.  Chlamidia is a > | mycoplasma.  Mycoplasmas reproduce very slowly and under highly specific > | circumstances most suitable for their reproduction… unnoticed. > | > | They present to the immune system, pieces of whatever tissue they have > | invaded.  Thus they hide.  The body catches on.  The auto-immune process > | proceeds. > | > | Kill the mycoplasm. > | > | Allow the body to reach proper homeostasis. > | > | Disease cured. > | > | End of story. > | > | Our bodies are the result of hundreds of millions of years of evolution. > It > | knows how to calm down… when its given the chance.  In your example, the

| chlamydia was probably brought down to levels that were unculterable and

a

| cure was ASSUMED with no attempt made for PCR DNA verification.  I dont | know.  But I can almost be certain that that’s the case.  It can take

over

a | year to be cured of a mycoplasmal infection, maybe longer in | multi-mycoplasmal infections.  Thus the failure rate when antibiotics

are

| used for only a few weeks or months. | | These entities USE our own bodies identity as a disguise.  That’s why

when

| their number becomes large enough, the immune process turns auto-immune. It | knows its attacking self while its attacking a disguised invader… but its | a last ditch effort, that in our case, saves us death from encephalitis, | etc.,  Our body knows what its doing.  It knows exactly what its doing. It | knows when to stop, and when to start.  Unfortunate accidental damage | occurs, but its better than death.  Its no mistake that Solumedrol, | Prednisone, Cortisone, etc., help with exacerbation’s… they kill | mycoplasmas… and that’s been known ever since the discovery of ACTH. But | nobody but myself will ever give you that piece of info Paul. | | Mycoplasmas live WITHIN our WBC’s and our oligodendrocytes.  They USE

MBP

as | a disguise to present to the immune system.  I wouldn’t be suprised to find | that the reason a large percentage of lesions are periventricular is because | of such ready access to glucose, and arginine within free flowing CSF fluid. | They live within vacuoles, mytochondria, yada yada.  Thus the reason for the | immune systems attacks upon glial cells on occasion, along with | oligodendrocytes, axons themselves, (not just the myelin) neurons even. | | | We dont have an auto-immune disease caused by faulty genetics. | | We have a disease caused by a convergence of mycoplasmas, co-infections, and | our genetic proclivity for survival.  Perhaps if we didn’t have such a | ramped up immune system we would already be dead from a meningitis or | encephalitis of unknown cause.  (of course if would be our lil mycoplasmas) | | Rob | | | Has anyone here EVER had your CSF tested for a mycoplasmal infection

using

| DNA verification?  Of course not.  Ill bet not ONE person here has ever been | tested to see if they have the single most likely cause of MS.  Look

back

at | Pauls study where the same samples were sent to two separate

universities.

| Note the results.  That’s your AMA controlled medical institutions at

work

| making money. | | Also, Inflammations is the cause of nothing.  Its the result of the

immune

| systems knowing attack upon infected cells that have mycoplasmas in

them,

or | that have the same markers that the mycoplasmas have been using as a | disguise.  We cant blame inflammation as the CAUSE when its the mycoplasmas | presence that is the CAUSE. | | MBP is the disguise mycoplasmas use in many of us.  Thus the limited success | of copaxone.  Its an allergy shot basically, that wont do a thing to

stop

| the spreading of the infection.  I am having serious reservations about the | long term impact of desensitizing the immune system to the presence of

the

| mycoplasmas shield.  I think it may lead to further auto-immune diseases | when the mycoplasmas spread to other areas of the body unchecked.  (of | course that will make for a fat paycheck for the pharms down the road

when

| they come up with new treatments, not to mention that the mycoplasmas

can

| spread from person to person unchecked) | | | Also, there is another danger I was reluctant to mention earlier.  The

use

| of copaxone may actually cause MORE MS to occur in the general

population

by | acclimating our immune system to the mycoplasmas presence, and thus | spreading it even more among the population… rather than having our

body

| hold the infection in check, its in essence ignoring it.  I bet we will soon | see down the road a higher percentage of spread from parent-to-child for | those using copaxone.  That’s my greatest fear.  That the pharms are simply | setting us, and our children, up to produce more customers. | | Now think.  IF this disease is caused by mycoplasmas and co-infections, AND | we are using copaxone to numb our immune system to their presence, what

is > | the logical result?  These are contagious… so what would be the result > IF > | MS is caused by mycoplasma and its use of self as disguise? > | > | > | Rob > | (that answer is obvious.  More people with MS in a few years, more money > for > | the pharms, and a never ending supply of auto-immune diseases to make > money > | off of.) > | > | > | "Paul Jones" <jones.p…@btconnect.com

wrote in message

> | news:3D5D8E50.F94D71D1@btconnect.com… > | > Paul Jones wrote: > | > > > | > > What they will not do is prevent axonal degeneration > | > > because it is very clear that inflammation is the sole cause > | > > of this. > | > > | > This should have read: > | > > | > What they will not do is prevent axonal degeneration because > | > it is very clear that inflammation is NOT the sole cause of > | > this. > | > > | > Take care, > | > Paul > | > All About MS – the latest MS News and Views > | > http://www.mult-sclerosis.org/ > | > > | > |

Response:

rob, you wrote:

"Its no mistake that Solumedrol, Prednisone, Cortisone, etc., help with exacerbation’s" Um……sure they do for a while that is, sometimes, usually…….but NOT always. — Take Care : ) JulieD "Stef Duncan" <robandstef2…@earthlink.net

wrote in message

news:tVi79.8016$I6.623791@newsread1.prod.itd.earthlink.net… | Just a quick note, without replying to your earlier response.  With the help | of antibiotics the body can rid itself of mycoplasmas.  Chlamidia is a | mycoplasma.  Mycoplasmas reproduce very slowly and under highly specific | circumstances most suitable for their reproduction… unnoticed. | | They present to the immune system, pieces of whatever tissue they have | invaded.  Thus they hide.  The body catches on.  The auto-immune process | proceeds. | | Kill the mycoplasm. | | Allow the body to reach proper homeostasis. | | Disease cured. | | End of story. | | Our bodies are the result of hundreds of millions of years of evolution. It | knows how to calm down… when its given the chance.  In your example, the | chlamydia was probably brought down to levels that were unculterable and a | cure was ASSUMED with no attempt made for PCR DNA verification.  I dont | know.  But I can almost be certain that that’s the case.  It can take over a | year to be cured of a mycoplasmal infection, maybe longer in | multi-mycoplasmal infections.  Thus the failure rate when antibiotics are | used for only a few weeks or months. | | These entities USE our own bodies identity as a disguise.  That’s why when | their number becomes large enough, the immune process turns auto-immune. It | knows its attacking self while its attacking a disguised invader… but its | a last ditch effort, that in our case, saves us death from encephalitis, | etc.,  Our body knows what its doing.  It knows exactly what its doing. It | knows when to stop, and when to start.  Unfortunate accidental damage | occurs, but its better than death.  Its no mistake that Solumedrol, | Prednisone, Cortisone, etc., help with exacerbation’s… they kill | mycoplasmas… and that’s been known ever since the discovery of ACTH. But | nobody but myself will ever give you that piece of info Paul. | | Mycoplasmas live WITHIN our WBC’s and our oligodendrocytes.  They USE MBP as | a disguise to present to the immune system.  I wouldn’t be suprised to find | that the reason a large percentage of lesions are periventricular is because | of such ready access to glucose, and arginine within free flowing CSF fluid. | They live within vacuoles, mytochondria, yada yada.  Thus the reason for the | immune systems attacks upon glial cells on occasion, along with | oligodendrocytes, axons themselves, (not just the myelin) neurons even. | | | We dont have an auto-immune disease caused by faulty genetics. | | We have a disease caused by a convergence of mycoplasmas, co-infections, and | our genetic proclivity for survival.  Perhaps if we didn’t have such a | ramped up immune system we would already be dead from a meningitis or | encephalitis of unknown cause.  (of course if would be our lil mycoplasmas) | | Rob | | | Has anyone here EVER had your CSF tested for a mycoplasmal infection using | DNA verification?  Of course not.  Ill bet not ONE person here has ever been | tested to see if they have the single most likely cause of MS.  Look back at | Pauls study where the same samples were sent to two separate universities. | Note the results.  That’s your AMA controlled medical institutions at work | making money. | | Also, Inflammations is the cause of nothing.  Its the result of the immune | systems knowing attack upon infected cells that have mycoplasmas in them, or | that have the same markers that the mycoplasmas have been using as a | disguise.  We cant blame inflammation as the CAUSE when its the mycoplasmas | presence that is the CAUSE. | | MBP is the disguise mycoplasmas use in many of us.  Thus the limited success | of copaxone.  Its an allergy shot basically, that wont do a thing to stop | the spreading of the infection.  I am having serious reservations about the | long term impact of desensitizing the immune system to the presence of the | mycoplasmas shield.  I think it may lead to further auto-immune diseases | when the mycoplasmas spread to other areas of the body unchecked.  (of | course that will make for a fat paycheck for the pharms down the road when | they come up with new treatments, not to mention that the mycoplasmas can | spread from person to person unchecked) | | | Also, there is another danger I was reluctant to mention earlier.  The use | of copaxone may actually cause MORE MS to occur in the general population by | acclimating our immune system to the mycoplasmas presence, and thus | spreading it even more among the population… rather than having our body | hold the infection in check, its in essence ignoring it.  I bet we will soon | see down the road a higher percentage of spread from parent-to-child for | those using copaxone.  That’s my greatest fear.  That the pharms are simply | setting us, and our children, up to produce more customers. | | Now think.  IF this disease is caused by mycoplasmas and co-infections, AND | we are using copaxone to numb our immune system to their presence, what is | the logical result?  These are contagious… so what would be the result IF | MS is caused by mycoplasma and its use of self as disguise? | | | Rob | (that answer is obvious.  More people with MS in a few years, more money for | the pharms, and a never ending supply of auto-immune diseases to make money | off of.) | | | "Paul Jones" <jones.p…@btconnect.com

wrote in message

| news:3D5D8E50.F94D71D1@btconnect.com… |

Paul Jones wrote:

|

|

What they will not do is prevent axonal degeneration

|

because it is very clear that inflammation is the sole cause

|

of this.

|

|

This should have read:

|

|

What they will not do is prevent axonal degeneration because

|

it is very clear that inflammation is NOT the sole cause of

|

this.

|

|

Take care,

|

Paul

|

All About MS – the latest MS News and Views

|

http://www.mult-sclerosis.org/

|

| |

Response:

On Sat, 17 Aug 2002 04:20:36 +0100, Paul Jones <jones.p…@btconnect.com

wrote: – Hide quoted text — Show quoted text -

Paul Jones wrote: This should have read: What they will not do is prevent axonal degeneration because it is very clear that inflammation is NOT the sole cause of this. d…@cheetah.net wrote: Paul you got my attention here. Could you explain in more detail what is meant by "very clear that inflammation is Not . . .." Prevention and relief are to be delineated, right? Hi Donn, There appears to be two process that cause damage in MS. 1. Inflammation – this is basically what happens in your skin when you get a pimple. Inflammation results in demyelination, oligodendrocyte cell death and axonal damage. (Oligodendrocytes are support cells in the brain and spinal cord which produce and repair myelin and feed the axons essential factors. Axons are the long thin extensions of the nerve cells which are normally sheathed in myelin and which connect the nerves to other nerves.) Demyelination is potentially reversible providing that there are oligodendrocytes around to make more myelin. Oligodendrocyte death doesn’t directly cause noticable symptoms but it is bad news because oligodendrocytes are not easily replaced. Axonal damage includes damage to the axon’s membrane which makes remyelination more difficult and axonal transection which is where the axon is cut clean. Axonal transection is really bad news because it effectively renders the whole nerve cell useless. Inflammation is the primary cause of the symptoms in early MS and is strongly correlated with relapses. It gets less and less frequent as the disease progresses and is much less frequent in secondary-progressive MS than in relapsing-remitting MS. Inflammation is less of a factor in primary-progressive MS for reasons that escape everyone. 2. Axonal transection in the absence of inflammation – this is where the axon breaks seemingly all by itself. It is my belief that transection without inflammation is caused by oligodendrocyte cell death earlier in the disease course. The oligodendrocytes feed essential factors to the axons. An axon without these factors can go on for months and years functioning okay but will often transect later on. Axonal transection causes most of the damage in progressive forms of MS. The 2 graphs at the top of this graphic, by Compston and Coles of Adenbrookes Hospital, Cambridge, UK shows these two processes in a typical disease course: http://www.mult-sclerosis.org/news/May2002/ms8.jpg An important point here is the clinical threshold below which the damage doesn’t cause any symptoms. I hope this explains what I meant. Prevention and relief are indeed very different things. If I understand you right, prevention encompasses therapies that stop the damage. As things stand, most therapies (e.g. the ABCRN treatments) only address inflammation and not axonal transection. Relief involves therapies that make the symptoms of MS more bearable. These include baclofen for spasticity or meclizine for vertigo. These don’t do anything for the underlying problems. The third element, which you didn’t memntion, is reversing the damage. As things stand there’s not much around for this right now. Stem cells aim in this direction and growth factors might do some good if only the NMSS, NIH or other public body would fund the work and trials on them. Take care, Paul

Thank you very much, Paul. Yes, your answer clears up some of the gray areas of causation concepts. And as usual, your articulate and very direct way of responding is as ever very superb and appreciated. The concepts regarding reversing damage to the myelin sheath has been very theoretical. And I think I can safely say, theories of recent are based more on research rather than looking at the simplistic models of past years. Now if the research folks can get the funds and political support to apply stem cell research on a broader scope, maybe there will be several of the degenerative diseases controlled and thus solved in terms of causation. However, the idea of a cure is pretty far out there. I am, at this stage of my life, happy to manage. With great respect and admiration, Donn ps: We chaps who live at the far edges of the original thirteen colonies still appreciate a good Brit here and there.

Response:

"Paul Jones" <jones.p…@btconnect.com

wrote in message

news:3D5DC104.79DC78EC@btconnect.com… – Hide quoted text — Show quoted text -

Paul Jones wrote: This should have read: What they will not do is prevent axonal degeneration because it is very clear that inflammation is NOT the sole cause of this. d…@cheetah.net wrote: Paul you got my attention here. Could you explain in more detail what is meant by "very clear that inflammation is Not . . .." Prevention and relief are to be delineated, right? Hi Donn, There appears to be two process that cause damage in MS. 1. Inflammation – this is basically what happens in your skin when you get a pimple. Inflammation results in demyelination, oligodendrocyte cell death and axonal damage. (Oligodendrocytes are support cells in the brain and spinal cord which produce and repair myelin and feed the axons essential factors. Axons are the long thin extensions of the nerve cells which are normally sheathed in myelin and which connect the nerves to other nerves.) Demyelination is potentially reversible providing that there are oligodendrocytes around to make more myelin. Oligodendrocyte death doesn’t directly cause noticable symptoms but it is bad news because oligodendrocytes are not easily replaced. Axonal damage includes damage to the axon’s membrane which makes remyelination more difficult and axonal transection which is where the axon is cut clean. Axonal transection is really bad news because it effectively renders the whole nerve cell useless.

UM, Im not sure Paul meant to say that.  A neuron can have dozens of axons going in a gazillion directions.  So if one or two axons are damaged it wont mean much.  However… thousands and thousands of axons can be damaged in less than a sq millimeter.  But a few transected axons from a neuron might not do much.  Not sure if I made that any clearer. – Hide quoted text — Show quoted text -

Inflammation is the primary cause of the symptoms in early MS and is strongly correlated with relapses. It gets less and less frequent as the disease progresses and is much less frequent in secondary-progressive MS than in relapsing-remitting MS. Inflammation is less of a factor in primary-progressive MS for reasons that escape everyone. 2. Axonal transection in the absence of inflammation – this is where the axon breaks seemingly all by itself. It is my belief that transection without inflammation is caused by oligodendrocyte cell death earlier in the disease course. The oligodendrocytes feed essential factors to the axons. An axon without these factors can go on for months and years functioning okay but will often transect later on. Axonal transection causes most of the damage in progressive forms of MS.

Paul, in your idea, do you think the axons break, or are seperated, at the nodes of ranvier?  (sp?)  If there is evidence of separation at those points along the axon you may be spot on with your idea.  Because that is the ONLY place they can readily get nutrients… so if oligodendrocytes are messed up, and not reparing damage, then it makes sense that they might suffer transection at their most vulnerable point.  The nodes of ranvier.  (sp?) – Hide quoted text — Show quoted text -

The 2 graphs at the top of this graphic, by Compston and Coles of Adenbrookes Hospital, Cambridge, UK shows these two processes in a typical disease course: http://www.mult-sclerosis.org/news/May2002/ms8.jpg An important point here is the clinical threshold below which the damage doesn’t cause any symptoms. I hope this explains what I meant. Prevention and relief are indeed very different things. If I understand you right, prevention encompasses therapies that stop the damage. As things stand, most therapies (e.g. the ABCRN treatments) only address inflammation and not axonal transection. Relief involves therapies that make the symptoms of MS more bearable. These include baclofen for spasticity or meclizine for vertigo. These don’t do anything for the underlying problems. The third element, which you didn’t memntion, is reversing the damage. As things stand there’s not much around for this right now. Stem cells aim in this direction and growth factors might do some good if only the NMSS, NIH or other public body would fund the work and trials on them. Take care, Paul All About MS – the latest MS News and Views http://www.mult-sclerosis.org/

Paul, there is no reason on earth why I cant have healthy uninfected oligodendrocytes easily removed from my brain, cloned, cultured, and easily reinjected directly into the ventricles.  However, NOBODY is willing to do this.  NOBODY.  And I am the perfect candidate.  I wouldn’t even call it brain surgery…  (insert joke here) because I have a 6 mil wide hole in my skull and an endoscope can go into and get out of my ventricles in a matter of a few minutes. Close the dura, sow shut my scalp, walk out the hospital door all in the same day.  Yet… I wonder why nobody is interested in doing that, and are so fucking interested in all of these other ridiculously expensive and most likely useless procedures.  Is there a better candidate for this procedure? Anywhere in the world?  I know there isn’t.  I could have this done, awake, on an out-patient basis… Wouldn’t it make for a wonderful examination into whether new and healthy oligodendrocytes would improve myelination?  There is a reason NOBODY will do this Paul.  You find me a clinic/hospital who would actually do normal, intelligent, ethical, and SAFE research of this kind and I am the first volunteer. As it stands, something as simple as this, which I had thought of YEARS ago, is beyond my ability to get done.  There isn’t a more suitable candidate on this earth.  Nor a more willing one.  Yet I have always been left speechless with the pharm controlled medical industries unwillingness to do ACTUAL research that is COMPLETELY safe.  (For me, not just anybody) Cut scalp, Cut dura, insert endoscope, suck out some CSF, culture healthy oligodendrocytes re-inject millions. Observe remyelination. If I recall correctly, my dura and scalp were sown shut by a grad student. Its not difficult folks.  I wouldn’t trust the endoscopic manipulation to anyone other than someone top notch, but there is no reason it should take a good neuro more than 15 minutes if all he had to do was navigate to the ventricles.  Everything else can be done by students. And there isn’t a hospital lab on earth willing to do this simplest of procedures. At some point the reason why has to sink in. there is no money in a cure, folks. Rob

Response:

I’m not disputing the legitimacy or value of tests comparing outcomes of different MS drugs, nor of tests comparing the outcomes of tests using different dosages of the same drug.  I’m just saying that looking only at the total weekly dose typically used for, say, Betaseron compared with the total weekly dose typically used for Avonex can be misleading. I agree that comparison tests between and among different MS drugs are *very* relevant, but if you want a valid comparison regarding the effect of total dosage on outcomes, you need to control for differences *other* than dosage levels that could be responsible for different outcomes.  I was responding to comments I’ve seen several times now that seem to be looking *only* at dosage levels, without taking other factors into consideration. In any case, the most important thing is how a particular drug reacts on you, as an individual patient.  What works for you may not work for me, and vice versa. To me, the importance of comparison testing is that it provides more information to consider in evaluating the range of options available to me.  I just know I need to be careful about how I interprest that information, so that I don’t jump to unwarranted conclusions. –Laura R.M. ========================== – Hide quoted text — Show quoted text -Paul Jones <jones.p…@btconnect.com

wrote in message <news:3D5B194F.7DECD104@btconnect.com… "Laura R.M." wrote: The dose-related stuff may be true for the interferons that are administered subcutaneously, but Avonex is administered intramuscularly.  That means the medicine is delivered and processed by the body in a different way.  Therefore, dosage comparisons between Avonex and, say, Rebif (another interferon of the same type) really is like comparing apples and oranges.  That’s even more the case when comparing Avonex with Betaseron, since these are different types of beta interferon and may work a little differently. Hi Laura, It’s still relevant to do comparative tests between these agents to see how they relatively effect the disease process. All the comparative tests have measured reduction in relapse rate and burden of disease under MRI. Neither the means of injection, the dose, nor even the actual drug itself invalidates such trials. Actually, the only study that has failed to show a dose-related effect was one sponsored by Biogen. Take care, Paul All About MS – the latest MS News and Views http://www.mult-sclerosis.org/

Response:

Paul Jones wrote: This should have read: What they will not do is prevent axonal degeneration because it is very clear that inflammation is NOT the sole cause of this.

d…@cheetah.net wrote:

Paul you got my attention here. Could you explain in more detail what is meant by "very clear that inflammation is Not . . .." Prevention and relief are to be delineated, right?

Hi Donn, There appears to be two process that cause damage in MS. 1. Inflammation – this is basically what happens in your skin when you get a pimple. Inflammation results in demyelination, oligodendrocyte cell death and axonal damage. (Oligodendrocytes are support cells in the brain and spinal cord which produce and repair myelin and feed the axons essential factors. Axons are the long thin extensions of the nerve cells which are normally sheathed in myelin and which connect the nerves to other nerves.) Demyelination is potentially reversible providing that there are oligodendrocytes around to make more myelin. Oligodendrocyte death doesn’t directly cause noticable symptoms but it is bad news because oligodendrocytes are not easily replaced. Axonal damage includes damage to the axon’s membrane which makes remyelination more difficult and axonal transection which is where the axon is cut clean. Axonal transection is really bad news because it effectively renders the whole nerve cell useless. Inflammation is the primary cause of the symptoms in early MS and is strongly correlated with relapses. It gets less and less frequent as the disease progresses and is much less frequent in secondary-progressive MS than in relapsing-remitting MS. Inflammation is less of a factor in primary-progressive MS for reasons that escape everyone. 2. Axonal transection in the absence of inflammation – this is where the axon breaks seemingly all by itself. It is my belief that transection without inflammation is caused by oligodendrocyte cell death earlier in the disease course. The oligodendrocytes feed essential factors to the axons. An axon without these factors can go on for months and years functioning okay but will often transect later on. Axonal transection causes most of the damage in progressive forms of MS. The 2 graphs at the top of this graphic, by Compston and Coles of Adenbrookes Hospital, Cambridge, UK shows these two processes in a typical disease course: http://www.mult-sclerosis.org/news/May2002/ms8.jpg An important point here is the clinical threshold below which the damage doesn’t cause any symptoms. I hope this explains what I meant. Prevention and relief are indeed very different things. If I understand you right, prevention encompasses therapies that stop the damage. As things stand, most therapies (e.g. the ABCRN treatments) only address inflammation and not axonal transection. Relief involves therapies that make the symptoms of MS more bearable. These include baclofen for spasticity or meclizine for vertigo. These don’t do anything for the underlying problems. The third element, which you didn’t memntion, is reversing the damage. As things stand there’s not much around for this right now. Stem cells aim in this direction and growth factors might do some good if only the NMSS, NIH or other public body would fund the work and trials on them. Take care, Paul All About MS – the latest MS News and Views http://www.mult-sclerosis.org/

Response:

Just a quick note, without replying to your earlier response.  With the help of antibiotics the body can rid itself of mycoplasmas.  Chlamidia is a mycoplasma.  Mycoplasmas reproduce very slowly and under highly specific circumstances most suitable for their reproduction… unnoticed. They present to the immune system, pieces of whatever tissue they have invaded.  Thus they hide.  The body catches on.  The auto-immune process proceeds. Kill the mycoplasm. Allow the body to reach proper homeostasis. Disease cured. End of story. Our bodies are the result of hundreds of millions of years of evolution.  It knows how to calm down… when its given the chance.  In your example, the chlamydia was probably brought down to levels that were unculterable and a cure was ASSUMED with no attempt made for PCR DNA verification.  I dont know.  But I can almost be certain that that’s the case.  It can take over a year to be cured of a mycoplasmal infection, maybe longer in multi-mycoplasmal infections.  Thus the failure rate when antibiotics are used for only a few weeks or months. These entities USE our own bodies identity as a disguise.  That’s why when their number becomes large enough, the immune process turns auto-immune.  It knows its attacking self while its attacking a disguised invader… but its a last ditch effort, that in our case, saves us death from encephalitis, etc.,  Our body knows what its doing.  It knows exactly what its doing.  It knows when to stop, and when to start.  Unfortunate accidental damage occurs, but its better than death.  Its no mistake that Solumedrol, Prednisone, Cortisone, etc., help with exacerbation’s… they kill mycoplasmas… and that’s been known ever since the discovery of ACTH.  But nobody but myself will ever give you that piece of info Paul. Mycoplasmas live WITHIN our WBC’s and our oligodendrocytes.  They USE MBP as a disguise to present to the immune system.  I wouldn’t be suprised to find that the reason a large percentage of lesions are periventricular is because of such ready access to glucose, and arginine within free flowing CSF fluid. They live within vacuoles, mytochondria, yada yada.  Thus the reason for the immune systems attacks upon glial cells on occasion, along with oligodendrocytes, axons themselves, (not just the myelin) neurons even. We dont have an auto-immune disease caused by faulty genetics. We have a disease caused by a convergence of mycoplasmas, co-infections, and our genetic proclivity for survival.  Perhaps if we didn’t have such a ramped up immune system we would already be dead from a meningitis or encephalitis of unknown cause.  (of course if would be our lil mycoplasmas) Rob Has anyone here EVER had your CSF tested for a mycoplasmal infection using DNA verification?  Of course not.  Ill bet not ONE person here has ever been tested to see if they have the single most likely cause of MS.  Look back at Pauls study where the same samples were sent to two separate universities. Note the results.  That’s your AMA controlled medical institutions at work making money. Also, Inflammations is the cause of nothing.  Its the result of the immune systems knowing attack upon infected cells that have mycoplasmas in them, or that have the same markers that the mycoplasmas have been using as a disguise.  We cant blame inflammation as the CAUSE when its the mycoplasmas presence that is the CAUSE. MBP is the disguise mycoplasmas use in many of us.  Thus the limited success of copaxone.  Its an allergy shot basically, that wont do a thing to stop the spreading of the infection.  I am having serious reservations about the long term impact of desensitizing the immune system to the presence of the mycoplasmas shield.  I think it may lead to further auto-immune diseases when the mycoplasmas spread to other areas of the body unchecked.  (of course that will make for a fat paycheck for the pharms down the road when they come up with new treatments, not to mention that the mycoplasmas can spread from person to person unchecked) Also, there is another danger I was reluctant to mention earlier.  The use of copaxone may actually cause MORE MS to occur in the general population by acclimating our immune system to the mycoplasmas presence, and thus spreading it even more among the population… rather than having our body hold the infection in check, its in essence ignoring it.  I bet we will soon see down the road a higher percentage of spread from parent-to-child for those using copaxone.  That’s my greatest fear.  That the pharms are simply setting us, and our children, up to produce more customers. Now think.  IF this disease is caused by mycoplasmas and co-infections, AND we are using copaxone to numb our immune system to their presence, what is the logical result?  These are contagious… so what would be the result IF MS is caused by mycoplasma and its use of self as disguise? Rob (that answer is obvious.  More people with MS in a few years, more money for the pharms, and a never ending supply of auto-immune diseases to make money off of.) "Paul Jones" <jones.p…@btconnect.com

wrote in message

news:3D5D8E50.F94D71D1@btconnect.com… – Hide quoted text — Show quoted text -

Paul Jones wrote: What they will not do is prevent axonal degeneration because it is very clear that inflammation is the sole cause of this. This should have read: What they will not do is prevent axonal degeneration because it is very clear that inflammation is NOT the sole cause of this. Take care, Paul All About MS – the latest MS News and Views http://www.mult-sclerosis.org/

Response:

On Sat, 17 Aug 2002 00:44:16 +0100, Paul Jones <jones.p…@btconnect.com

wrote:

Paul Jones wrote: What they will not do is prevent axonal degeneration because it is very clear that inflammation is the sole cause of this. This should have read: What they will not do is prevent axonal degeneration because it is very clear that inflammation is NOT the sole cause of this. Take care, Paul

Paul you got my attention here. Could you explain in more detail what is meant by "very clear that inflammation is Not . . .." Prevention and relief are to be delineated, right? Donn

Response:

"jdgargoyle" <jdanel…@uspower.net

wrote in message

news:ajj5an$1bkihc$1@ID-85198.news.dfncis.de…

Rob the risk of cardiac damage is very well documented by the manufacturer of novantrone.  They freely admit it in all documentation.

Yes, the risks of cardiac damage are very well documented to be minimal. And as far as I know, not one person in the US has experienced any cardiac damage from Novantrone.  Some have been taken off because of MUGA results, but no injuries or illness’.  If I am mistaken it can only be because I havent ran acrossed any info stating otherwise.  If you have some I would love to see it.

Novantrone is not for everyone……..please do not downplay a potentially very serious side effect.  Healthy heart and healthy weight included.

Its for everyone with a healthy heart.  No other reason not to take it other than liver or kidny problems.  If you have a normal heart there is absolutely no reason not to take it.  NONE.  I am downplaying a nearly non-existant side effect because as far as I know (and I suppose I could be wrong) there has not been one illness or fatality due to novantrones highly unlikely effect upon the left ventricles ejection fraction.  NONE.  Also, keep in mind, if a persons MUGA tests change while on Novantrone, it doesnt necessarily point the blame at the Novantrone.  Thats a common mistake in logic for some.  It just means that to be safe, Novantrone should be switched for something that has ZERO chance of effects on ejection fraction. Obesity and chlamidia pneumonia (a mycoplasm) are much more likely culprits.

I have seen the physicians tape on Novantrone, as well as the patient one. They, the manufacturer’s consider it a quite a serious risk, please do not down play that.

For a person with a normal heart… its not a serious risk at all.  Are you aware of some case, or instance, or situation, or occurance that shows otherwise in a person with MS?  Or are you just re-stating their obvious need to place a disclaimer in their informative material?  I dont think anyone other than dupes of the ABC companies and the misinformed consider it "quite a serious risk" for a person with a normal healthy heart.  For people of reasonable weight, in good health (outside of having MS of course) there is absolutely no reason not to be on it.  NONE.  ZERO.  ZILCH… other than unjustified paranoia.  It is the BEST drug for MS in existance.  Bar none, with no exceptions.  (for those who can use it after proper testing to make sure the heart is normal) The ABC pharms have a financial interest in overstating and continualy re-affirming unreasonable fears in people who are good candidates for this drug.  Do you think a MULTI-BILLION DOLLAR industry wouldnt play on peoples fears to maintain their market share in the fine world of MS money sucking near worthless treatments?  I used to be an Idealist as well.  I spent 5 years trying to maintain that status.  I spent 5 YEARS trying to remain innocent and naive.  I failed.  we are simply sources of money.  That is all that we are to the pharms.  Nothing more.  And we never will be.

I am glad it is working for you. — Take Care : ) JulieD

Julie, sorry for being so snide. (slaps self with wet noodle)  Im just sick of being a bottomless wallet to enrich scum-suckers.  The fear of Novantrone is groundless for a normal person with MS.  More people will die of MS in this one week alone, than will be injured by Novantrone in its usage over the next ten years.  Thats the truth.  Id rather see some of those people remain alive and promote the most effective drug for MS in existance.  It will save lives, families, jobs, careers, dreams, aspirations, hopes, desires, far in excess of any possible damage it may cause.  Keep in mind, some are on the ABC’s when its not the most healthy thing for them as well. Rob – Hide quoted text — Show quoted text -> "Stef Duncan" <robandstef2…@earthlink.net

wrote in message

> news:t%%69.5410$LO1.444345@newsread2.prod.itd.earthlink.net… > | > | "Paul Jones" <jones.p…@btconnect.com

wrote in message

> | news:3D5B12DD.3A722874@btconnect.com… > | > Stef Duncan wrote: > | > > > | > > If you only had to choose among those 4 then the best choice is > rebiff. > | > > If you had been presented with all of the honest and appropriate > | options, > | > > you would see that Novantrone is your only good option as long as your

| heart | is normal.  But, your ABC educated neurologist has probably never heard | of | it.  Ask to be fully informed about Novantrone (Mitoxantrone) or

find

a | new | neurologist before his ignorance costs you your life. | | Hmmm – your talk of costing lives is idle and misguided for | several reasons and I shall pick up one of those reasons. | | Mitaxantrone is probably the best ABCRN at dealing with | inflammation because it prevents cells from dividing and | therefore prevents T-cell and B-cell cloning which is vital | for the inflammatory process. | | Thats simply one of the reasons its effective.  It actually reduces the | amount of mycoplams in the cns. | | As you say, results from | Mitaxantrone are better than the ABCR drugs but the side | effects are also MUCH worse including heart issues. | | Actualy, not.  The side effects are minimal.  Ive been on every single drug | there has been.  I would much rather deal with a week or two of YUCK

than

a | lifetime long weekly, daily, or several times a week of shots,

reactions,

| and side effects.  The heart issue is a NON issue if you are tested and have | a healthy heart.  When the heart has been an issue, its been in regard

to

| structural deformaty or obesity.  The A and B kicks my ass hard side-effect | wise, if I goof and miss a pill, and the C burns like an acid injection. | | Novantrone is the best. | | | | | I don’t want to overstate the following position on | Mitaxantrone’s side-effects and that of other chemotherapies | (and there are other chemotherapeutic agents that are | effective in MS such as Methotrexate and Cyclophosphamide. | That the FDA has licensed Mitaxantrone and not the others | is, in my view, simply down to phase III human trials having | been done on the drug/disease). | | Chemos are very toxic chemicals which have very great | effects to all dividing cells in the body (this is why they | work in cancers). At the doses used in MS, Mitaxantrone is | very much less toxic than the doses used for cancer and that | enables PwMS to continue using the drug longer than cancer | patients can. For example, even when faced with death, | people with cancer simply cannot continue using chemos | because they will kill before the cancer does. At the kind | of doses of Mitaxantrone is given to PwMS, it is probably, | not very dangerous and worth the risks, but only if you are | staring down the barrel of an aggressive disease course. | | I think, in my opinion, you are way overstating the dangers and/or | potentials of problems.  Novantrone is NOT a type of chemo that goes

after

| ALL fast replicating cells.  Its more specific than that Paul.  Much

more.

| | | | So your talk of death from MS if we don’t use chemos is | rather perverse. Mitaxantrone is usually only prescribed for | 2 years PRECISELY BECAUSE OF THE CARDIAC AND OTHER RISKS. | They may very well give a person one or two years extra | non-profoundly disabled livespan so, whatever the risks, | they may be worth it but it’s not a cut and dried case. | | Furthermore, inflammation (which is what Mitaxantrone | essentially combats) is NOT the only way that MS does its | damage although it is probably the primary cause of these | other ways. There is no evidence, nor any reason to believe, | that Mitaxantrone is effective against these other ways | (e.g. axonal loss). | | Look at the following image (slightly blurred) of a typical | RRMS-SPMS disease course and immune modifiers. I think it | underlines my point visa vi inflammation: | http://www.mult-sclerosis.org/news/May2002/ms8.jpg | | Take care, | Paul | All About MS – the latest MS News and Views | http://www.mult-sclerosis.org/ | | |

Response:

Paul Jones wrote:

What they will not do is prevent axonal degeneration because it is very clear that inflammation is the sole cause of this.

This should have read: What they will not do is prevent axonal degeneration because it is very clear that inflammation is NOT the sole cause of this. Take care, Paul All About MS – the latest MS News and Views http://www.mult-sclerosis.org/

Response:

Stef Duncan wrote:

"Paul Jones" <jones.p…@btconnect.com wrote: Mitaxantrone is probably the best ABCRN at dealing with inflammation because it prevents cells from dividing and therefore prevents T-cell and B-cell cloning which is vital for the inflammatory process. Thats simply one of the reasons its effective.  It actually reduces the amount of mycoplams in the cns.

I’m keen not to overstate the case on Novantrone. It works, and for people with agressive MS, it is often the best drug currently available. However, for people with mild or early RRMS, it’s probably not the drug of choice. Each person should weigh up these decisions for themselves armed with all the facts and their doctors advice. It’s certainly not a cut-and-dried case although, like Julie, I am happy that it is working for you. However, just to get technical with you, Rob … Dihydroxyanthracenedione (better known as mitoxantrone – trade name Novantrone) is one of a group of chemicals which are known as DNA intercalators. That means that they produce breaks in the DNA during cell division (mitosis). They also inhibit the enzyme topoisomerase II (one of a class of biochemicals involved in the regulation of DNA coiling) which further inhibits cell division. This means that, at a high dose, they prevent almost all cell division and that includes bacterial mitosis as well as that of the bodies own cells. So yes, they will probably reduce the population of mycoplasmas. Whether that has anything to do with MS is an open question, but there are probably better, less toxic ways to rid oneself of a bacterial infection than through chemotherapy. Additionally, ridding oneself of a bacteria that promotes autoimmunity doesn’t end the autoimmune process. Chlamydia is a good case in point. Part of the effects of sexually transmitted Chlamydia (different but similar to Chlamydia Pneumonia) is to produce an autoimmune response in the genitals and this response continues even after the Chlamydia has been completely removed from the body! As I said before, in immunological terms mitoxantrone and other DNA intercalators stop T- and B-cell (lymphocyte) division. One of the first things that lymphocytes do when their receptors recognise their target antigen (e.g. a myelin protein) is to clone themselves. Some of these clones shed their receptors as antibodies (in the case of B-cells), others release pro-inflammatory messenger molecules (in the case of helper T-cells) and still others leave the site of inflammation and become memory cells to recognise that same antigen later on (one of the reasons that MS is a chronic disease). These effects will reduce or stop inflammation (depending on the dose) because T- and B-cells are crucial to it. What they will not do is prevent axonal degeneration because it is very clear that inflammation is the sole cause of this. In fact, and purely in hypothetical terms, they may make it worse since they prevent the bodies own stem cells from mitotic replication and this will include O2A oligodendrocyte precursor cells. Mitoxantrone is a relatively non-toxic chemotherapy which is rather like saying that the rattle snake is a relatively non-poisonous snake – it’s very poisonous but not as bad as the Taipan of Australia. One of the reasons that mitoxantrone is relatively non-toxic is because it produces a relatively small amount of free radicals and also because some of its effects are reversible. All chemotherapies work by interferring with mitosis at the DNA level. Some actually bind to the DNA itself. These means that they prevent all growth including liver regeneration, hair growth and sperm production. Mitoxantrone is quite a simple organic molecule, those with a basic grounding in chemistry will understand this diagram of its structure: http://www.mult-sclerosis.org/mitoxantrone.jpg In time, I believe that monoclonal antibodies or designer vaccines will replace chemotherapies. These have the potential to be far less toxic and to be much more precisely targetted – eliminating a specific cell type rather than shutting down all cell replication. For example, Campath-1H only attacks cells that express the CD52 leukocyte antigen – chiefly the inflammation causing leukocytes. Antegren is another powerful but specific anti-inflammatory which attacks cells expressing the alpha-4-beta 1 (VLA-4) and alpha-4-beta-7 integrins thus interferring with leukocytes crossing the blood-brain-barrier into the central nervous system. Take care, Paul All About MS – the latest MS News and Views http://www.mult-sclerosis.org/

Response:

Rob the risk of cardiac damage is very well documented by the manufacturer of novantrone.  They freely admit it in all documentation. Novantrone is not for everyone……..please do not downplay a potentially very serious side effect.  Healthy heart and healthy weight included. I have seen the physicians tape on Novantrone, as well as the patient one. They, the manufacturer’s consider it a quite a serious risk, please do not down play that. I am glad it is working for you. — Take Care : ) JulieD "Stef Duncan" <robandstef2…@earthlink.net

wrote in message

news:t%%69.5410$LO1.444345@newsread2.prod.itd.earthlink.net… | | "Paul Jones" <jones.p…@btconnect.com

wrote in message

| news:3D5B12DD.3A722874@btconnect.com… |

Stef Duncan wrote:

|

|

If you only had to choose among those 4 then the best choice is

rebiff. |

If you had been presented with all of the honest and appropriate

| options, |

you would see that Novantrone is your only good option as long as your

| heart |

is normal.  But, your ABC educated neurologist has probably never

heard | of |

it.  Ask to be fully informed about Novantrone (Mitoxantrone) or find

a | new |

neurologist before his ignorance costs you your life.

|

|

Hmmm – your talk of costing lives is idle and misguided for

|

several reasons and I shall pick up one of those reasons.

|

|

Mitaxantrone is probably the best ABCRN at dealing with

|

inflammation because it prevents cells from dividing and

|

therefore prevents T-cell and B-cell cloning which is vital

|

for the inflammatory process.

| | Thats simply one of the reasons its effective.  It actually reduces the | amount of mycoplams in the cns. | |

As you say, results from

|

Mitaxantrone are better than the ABCR drugs but the side

|

effects are also MUCH worse including heart issues.

| | Actualy, not.  The side effects are minimal.  Ive been on every single drug | there has been.  I would much rather deal with a week or two of YUCK than a | lifetime long weekly, daily, or several times a week of shots, reactions, | and side effects.  The heart issue is a NON issue if you are tested and have | a healthy heart.  When the heart has been an issue, its been in regard to | structural deformaty or obesity.  The A and B kicks my ass hard side-effect | wise, if I goof and miss a pill, and the C burns like an acid injection. | | Novantrone is the best. | | | |

|

I don’t want to overstate the following position on

|

Mitaxantrone’s side-effects and that of other chemotherapies

|

(and there are other chemotherapeutic agents that are

|

effective in MS such as Methotrexate and Cyclophosphamide.

|

That the FDA has licensed Mitaxantrone and not the others

|

is, in my view, simply down to phase III human trials having

|

been done on the drug/disease).

|

|

Chemos are very toxic chemicals which have very great

|

effects to all dividing cells in the body (this is why they

|

work in cancers). At the doses used in MS, Mitaxantrone is

|

very much less toxic than the doses used for cancer and that

|

enables PwMS to continue using the drug longer than cancer

|

patients can. For example, even when faced with death,

|

people with cancer simply cannot continue using chemos

|

because they will kill before the cancer does. At the kind

|

of doses of Mitaxantrone is given to PwMS, it is probably,

|

not very dangerous and worth the risks, but only if you are

|

staring down the barrel of an aggressive disease course.

| | I think, in my opinion, you are way overstating the dangers and/or | potentials of problems.  Novantrone is NOT a type of chemo that goes after | ALL fast replicating cells.  Its more specific than that Paul.  Much more. | | |

|

So your talk of death from MS if we don’t use chemos is

|

rather perverse. Mitaxantrone is usually only prescribed for

|

2 years PRECISELY BECAUSE OF THE CARDIAC AND OTHER RISKS.

|

They may very well give a person one or two years extra

|

non-profoundly disabled livespan so, whatever the risks,

|

they may be worth it but it’s not a cut and dried case.

|

|

Furthermore, inflammation (which is what Mitaxantrone

|

essentially combats) is NOT the only way that MS does its

|

damage although it is probably the primary cause of these

|

other ways. There is no evidence, nor any reason to believe,

|

that Mitaxantrone is effective against these other ways

|

(e.g. axonal loss).

|

|

Look at the following image (slightly blurred) of a typical

|

RRMS-SPMS disease course and immune modifiers. I think it

|

underlines my point visa vi inflammation:

|

http://www.mult-sclerosis.org/news/May2002/ms8.jpg

|

|

Take care,

|

Paul

|

All About MS – the latest MS News and Views

|

http://www.mult-sclerosis.org/

|

| |

Response:

"Laura R.M." wrote:

The dose-related stuff may be true for the interferons that are administered subcutaneously, but Avonex is administered intramuscularly.  That means the medicine is delivered and processed by the body in a different way.  Therefore, dosage comparisons between Avonex and, say, Rebif (another interferon of the same type) really is like comparing apples and oranges.  That’s even more the case when comparing Avonex with Betaseron, since these are different types of beta interferon and may work a little differently.

Hi Laura, It’s still relevant to do comparative tests between these agents to see how they relatively effect the disease process. All the comparative tests have measured reduction in relapse rate and burden of disease under MRI. Neither the means of injection, the dose, nor even the actual drug itself invalidates such trials. Actually, the only study that has failed to show a dose-related effect was one sponsored by Biogen. Take care, Paul All About MS – the latest MS News and Views http://www.mult-sclerosis.org/

Response:

"Paul Jones" <jones.p…@btconnect.com

wrote in message

news:3D5B12DD.3A722874@btconnect.com… – Hide quoted text — Show quoted text -

Stef Duncan wrote: If you only had to choose among those 4 then the best choice is rebiff. If you had been presented with all of the honest and appropriate

options,

you would see that Novantrone is your only good option as long as your

heart

is normal.  But, your ABC educated neurologist has probably never heard

of

it.  Ask to be fully informed about Novantrone (Mitoxantrone) or find a

new

neurologist before his ignorance costs you your life. Hmmm – your talk of costing lives is idle and misguided for several reasons and I shall pick up one of those reasons. Mitaxantrone is probably the best ABCRN at dealing with inflammation because it prevents cells from dividing and therefore prevents T-cell and B-cell cloning which is vital for the inflammatory process.

Thats simply one of the reasons its effective.  It actually reduces the amount of mycoplams in the cns.

As you say, results from Mitaxantrone are better than the ABCR drugs but the side effects are also MUCH worse including heart issues.

Actualy, not.  The side effects are minimal.  Ive been on every single drug there has been.  I would much rather deal with a week or two of YUCK than a lifetime long weekly, daily, or several times a week of shots, reactions, and side effects.  The heart issue is a NON issue if you are tested and have a healthy heart.  When the heart has been an issue, its been in regard to structural deformaty or obesity.  The A and B kicks my ass hard side-effect wise, if I goof and miss a pill, and the C burns like an acid injection. Novantrone is the best. – Hide quoted text — Show quoted text -

I don’t want to overstate the following position on Mitaxantrone’s side-effects and that of other chemotherapies (and there are other chemotherapeutic agents that are effective in MS such as Methotrexate and Cyclophosphamide. That the FDA has licensed Mitaxantrone and not the others is, in my view, simply down to phase III human trials having been done on the drug/disease). Chemos are very toxic chemicals which have very great effects to all dividing cells in the body (this is why they work in cancers). At the doses used in MS, Mitaxantrone is very much less toxic than the doses used for cancer and that enables PwMS to continue using the drug longer than cancer patients can. For example, even when faced with death, people with cancer simply cannot continue using chemos because they will kill before the cancer does. At the kind of doses of Mitaxantrone is given to PwMS, it is probably, not very dangerous and worth the risks, but only if you are staring down the barrel of an aggressive disease course.

I think, in my opinion, you are way overstating the dangers and/or potentials of problems.  Novantrone is NOT a type of chemo that goes after ALL fast replicating cells.  Its more specific than that Paul.  Much more. – Hide quoted text — Show quoted text -

So your talk of death from MS if we don’t use chemos is rather perverse. Mitaxantrone is usually only prescribed for 2 years PRECISELY BECAUSE OF THE CARDIAC AND OTHER RISKS. They may very well give a person one or two years extra non-profoundly disabled livespan so, whatever the risks, they may be worth it but it’s not a cut and dried case. Furthermore, inflammation (which is what Mitaxantrone essentially combats) is NOT the only way that MS does its damage although it is probably the primary cause of these other ways. There is no evidence, nor any reason to believe, that Mitaxantrone is effective against these other ways (e.g. axonal loss). Look at the following image (slightly blurred) of a typical RRMS-SPMS disease course and immune modifiers. I think it underlines my point visa vi inflammation: http://www.mult-sclerosis.org/news/May2002/ms8.jpg Take care, Paul All About MS – the latest MS News and Views http://www.mult-sclerosis.org/

Response:

Stef Duncan wrote:

If you only had to choose among those 4 then the best choice is rebiff. If you had been presented with all of the honest and appropriate options, you would see that Novantrone is your only good option as long as your heart is normal.  But, your ABC educated neurologist has probably never heard of it.  Ask to be fully informed about Novantrone (Mitoxantrone) or find a new neurologist before his ignorance costs you your life.

Hmmm – your talk of costing lives is idle and misguided for several reasons and I shall pick up one of those reasons. Mitaxantrone is probably the best ABCRN at dealing with inflammation because it prevents cells from dividing and therefore prevents T-cell and B-cell cloning which is vital for the inflammatory process. As you say, results from Mitaxantrone are better than the ABCR drugs but the side effects are also MUCH worse including heart issues. I don’t want to overstate the following position on Mitaxantrone’s side-effects and that of other chemotherapies (and there are other chemotherapeutic agents that are effective in MS such as Methotrexate and Cyclophosphamide. That the FDA has licensed Mitaxantrone and not the others is, in my view, simply down to phase III human trials having been done on the drug/disease). Chemos are very toxic chemicals which have very great effects to all dividing cells in the body (this is why they work in cancers). At the doses used in MS, Mitaxantrone is very much less toxic than the doses used for cancer and that enables PwMS to continue using the drug longer than cancer patients can. For example, even when faced with death, people with cancer simply cannot continue using chemos because they will kill before the cancer does. At the kind of doses of Mitaxantrone is given to PwMS, it is probably, not very dangerous and worth the risks, but only if you are staring down the barrel of an aggressive disease course. So your talk of death from MS if we don’t use chemos is rather perverse. Mitaxantrone is usually only prescribed for 2 years PRECISELY BECAUSE OF THE CARDIAC AND OTHER RISKS. They may very well give a person one or two years extra non-profoundly disabled livespan so, whatever the risks, they may be worth it but it’s not a cut and dried case. Furthermore, inflammation (which is what Mitaxantrone essentially combats) is NOT the only way that MS does its damage although it is probably the primary cause of these other ways. There is no evidence, nor any reason to believe, that Mitaxantrone is effective against these other ways (e.g. axonal loss). Look at the following image (slightly blurred) of a typical RRMS-

SPMS disease course and immune modifiers. I think it

underlines my point visa vi inflammation: http://www.mult-sclerosis.org/news/May2002/ms8.jpg Take care, Paul All About MS – the latest MS News and Views http://www.mult-sclerosis.org/

Response:

The dose-related stuff may be true for the interferons that are administered subcutaneously, but Avonex is administered intramuscularly.  That means the medicine is delivered and processed by the body in a different way.  Therefore, dosage comparisons between Avonex and, say, Rebif (another interferon of the same type) really is like comparing apples and oranges.  That’s even more the case when comparing Avonex with Betaseron, since these are different types of beta interferon and may work a little differently. That doesn’t mean it isn’t appropriate to ask your own neurologist about whether dosage should be adjusted (up or down) in your particular case.  But it is important to remember that while all of these drugs aim at slowing or stopping MS progression, they don’t all work in the same way biologically. And, of course, as always seems to be the case with MS, individual reactions vary and need to be monitored closely by a well-informed doctor.  (Finding a well-informed doctor who’s willing to work with you is often the biggest challenge–as I can attest to personally.) –Laura R.M. – Hide quoted text — Show quoted text -Ja…@Planet-Save.com (Jayne Adler) wrote in message <news:60223b1e.0208140734.17f747dc@posting.google.com

… My neurologist says the main problem w/MS is your body’s response to viruses. This is how the beta interferons came to be accepted therapies for MS. lso it has been shown that higher dosages of the beta interferons are more effective than the lesser dosages. Personally I use Betaseron but the recent addition of Rebif to US MS drugs is a good thing.      Jayne

Response:

- Hide quoted text — Show quoted text -"M@zBrain" wrote:

Hi All… I have been back and for to the neuro’s office for the last 4-5 years with S/S pointing toward a CNS disorder with no dx.  Recently I’ve developed secondary FMS and the neuro that I was referred to for the FMS also deals with alot of MS.  Coincidentally he found several changes on my neuro exam and requested yet another MRI w/wo.  Low and behold, this one came back with new lesions confirming a dx of MS. Now he has sent me home with 4 large patient info kits (Avonex, Betaseron, Copaxone and Rebif) and says I should look these over with my wife, and decide which one looks the best to me, as he is comfortable with all of them.  We did discuss SE’s, efficacy, and administration pros and cons for each, but the decision still seems tough.  I’m leaning toward Copaxone at the moment<g but would really appreciate any opinions from voices of experience here.

There are now three studies, two of which were patient (though not physician) unblinded (for obvious reasons) which have compared ABCR drugs. In all three studies, Avonex did significantly poorer than the other three, which all did about the same as eachother. Take care, Paul All About MS – the latest MS News and Views http://www.mult-sclerosis.org/

Response:

"Jayne Adler" <Ja…@Planet-Save.com

wrote… My neurologist says the main problem w/MS is your body’s response to viruses.

I do not know if I would call it the main problem, lets say it is *A* problem.

This is how the beta interferons came to be accepted therapies for MS.

Very true.

lso it has been shown that higher dosages of the beta interferons are more effective than the lesser dosages.

This has been shown to be untrue in many cases.

Personally I use Betaseron but the recent addition of Rebif to US MS drugs is a good thing.

Also true. Though some prefer the once a week to every three days and others prefer the IM injection to the s/c one (less painful, fewer reaction site issues). — MichKa Michael Kaplan Trigeminal Software, Inc.  – http://www.trigeminal.com/

Response:

If you only had to choose among those 4 then the best choice is rebiff. If you had been presented with all of the honest and appropriate options, you would see that Novantrone is your only good option as long as your heart is normal.  But, your ABC educated neurologist has probably never heard of it.  Ask to be fully informed about Novantrone (Mitoxantrone) or find a new neurologist before his ignorance costs you your life. Rob "M@zBrain" <matz…@charter.net

wrote in message

news:e2ljluchtqcnfl2ier45rs3l1mmaosr58v@4ax.com… – Hide quoted text — Show quoted text -

Hi All… I have been back and for to the neuro’s office for the last 4-5 years with S/S pointing toward a CNS disorder with no dx.  Recently I’ve developed secondary FMS and the neuro that I was referred to for the FMS also deals with alot of MS.  Coincidentally he found several changes on my neuro exam and requested yet another MRI w/wo.  Low and behold, this one came back with new lesions confirming a dx of MS. Now he has sent me home with 4 large patient info kits (Avonex, Betaseron, Copaxone and Rebif) and says I should look these over with my wife, and decide which one looks the best to me, as he is comfortable with all of them.  We did discuss SE’s, efficacy, and administration pros and cons for each, but the decision still seems tough.  I’m leaning toward Copaxone at the moment<g but would really appreciate any opinions from voices of experience here. TIA! Matt "My mom thinks all this was caused from dropping me on my head when I was young…I disagree, however the dent makes a fine ashtray!"

Response:

Hi Matt I take Copaxone…have done well on it…don’t mind the daily injections…have had very few site reactions, have had no side-effects, etc. I think one’s lifestyle should be a considering factor. Working schedule, leisure activities, family commitments, etc should be considered when deciding how injection schedules, site reactions, side-effects, etc would ‘fit-in’ to all that. It is a highly individual choice, but bottom line ( and probably why your doc doesn’t have a preference ) is that they all offer about the same level of efficiency, and even that could be debated til sunrise and back again. Good luck w/ your decision…Rhonda On Wed, 14 Aug 2002 04:10:45 GMT, "M@zBrain" <matz…@charter.net

wrote: – Hide quoted text — Show quoted text -

Now he has sent me home with 4 large patient info kits (Avonex, Betaseron, Copaxone and Rebif) and says I should look these over with my wife, and decide which one looks the best to me, as he is comfortable with all of them.  

Response:

My neurologist says the main problem w/MS is your body’s response to viruses. This is how the beta interferons came to be accepted therapies for MS. lso it has been shown that higher dosages of the beta interferons are more effective than the lesser dosages. Personally I use Betaseron but the recent addition of Rebif to US MS drugs is a good thing.      Jayne

Response:

Cath wrote:

Hi, For what its worth, I personally was on Avonex for 2 yrs and then found the flu symptoms too much and they were getting worse instead of better. I’m now on COpaxone, and have no probs with injecting or anything at all really. I also find their customer support terrific, something that wasn’t there with Avonex. Its a decision that only you can make though……………

FWIW, again, I was on Copaxone for over 7 months until my doctor took me off to go on Novantrone earlier this year. While on Copaxone, I had absolutely no side-effects (flu-like symptoms, site irritation, etc. ) and tolerated it very well. If I were to go back on an injectable that would again be my choice. As has been stated earlier in this thread, everyone reacts differently. My information has seemed to indicate that Copaxone and Refif have the best "track-record" so you might read all the literature provided and hope for the best. Good luck.

Response:

Hi, For what its worth, I personally was on Avonex for 2 yrs and then found the flu symptoms too much and they were getting worse instead of better. I’m now on COpaxone, and have no probs with injecting or anything at all really. I also find their customer support terrific, something that wasn’t there with Avonex. Its a decision that only you can make though…………… Take care, Cath "M@zBrain" <matz…@charter.net

wrote in message

news:e2ljluchtqcnfl2ier45rs3l1mmaosr58v@4ax.com… – Hide quoted text — Show quoted text -

Hi All… I have been back and for to the neuro’s office for the last 4-5 years with S/S pointing toward a CNS disorder with no dx.  Recently I’ve developed secondary FMS and the neuro that I was referred to for the FMS also deals with alot of MS.  Coincidentally he found several changes on my neuro exam and requested yet another MRI w/wo.  Low and behold, this one came back with new lesions confirming a dx of MS. Now he has sent me home with 4 large patient info kits (Avonex, Betaseron, Copaxone and Rebif) and says I should look these over with my wife, and decide which one looks the best to me, as he is comfortable with all of them.  We did discuss SE’s, efficacy, and administration pros and cons for each, but the decision still seems tough.  I’m leaning toward Copaxone at the moment<g but would really appreciate any opinions from voices of experience here. TIA! Matt "My mom thinks all this was caused from dropping me on my head when I was young…I disagree, however the dent makes a fine ashtray!"

Response:

Nobody here can tell you anything more than you have in your packages.  Some MSers use this that or the other.  :0) My son read the literature and chose Rebif; he is happy with it so far. Gaylan "M@zBrain" <matz…@charter.net

wrote in message

news:e2ljluchtqcnfl2ier45rs3l1mmaosr58v@4ax.com… – Hide quoted text — Show quoted text -

Hi All… I have been back and for to the neuro’s office for the last 4-5 years with S/S pointing toward a CNS disorder with no dx.  Recently I’ve developed secondary FMS and the neuro that I was referred to for the FMS also deals with alot of MS.  Coincidentally he found several changes on my neuro exam and requested yet another MRI w/wo.  Low and behold, this one came back with new lesions confirming a dx of MS. Now he has sent me home with 4 large patient info kits (Avonex, Betaseron, Copaxone and Rebif) and says I should look these over with my wife, and decide which one looks the best to me, as he is comfortable with all of them.  We did discuss SE’s, efficacy, and administration pros and cons for each, but the decision still seems tough.  I’m leaning toward Copaxone at the moment<g but would really appreciate any opinions from voices of experience here. TIA! Matt "My mom thinks all this was caused from dropping me on my head when I was young…I disagree, however the dent makes a fine ashtray!"

Response:

Fatigue Drug List

Question:

"cocobunny" <cocobu…@shaw.ca

wrote in message news:3BE45A22.7A502DCB@shaw.ca… fyi cylert has been taken off the market due to liver damage.  In Canada at least.

News to me… when was this removal done? Cylert (pemoline) is described in my handy 1998 CanMedAssoc MS handbook as a "newer" medication to combat fatigue.   This is something I find puzzling, since pemoline was first synbthesized in the late 1920’s and first used to combat fatigue in WWII bomber pilots on long-range missions. I tried it out as an illicit (and not unpleasant) stimulant when I was 15… that’s nearly 27 years ago. — Michael <muirh…@island.net

   Peace is not the absence of war, but the universal presence of justice. – Hide quoted text — Show quoted text -

Gerry Ann wrote: The list my patient info book has is Amantadine, Cylert and provigil. Gerry Ann  Amantadine didn’t do anything for me.  And as you know I am now on provigil which I’m trying to see if it will work.  Do have a big headache, but don’t know if it is from it or not. — — Remove the CAPS to reply  — "cocobunny" <cocobu…@shaw.ca wrote in message news:3BE43C49.CE5A81BA@shaw.ca… This topic seems to come up a lot. I saw a list once, somewhere of a recommended list of drugs for fatigue – it started with Amantadine, then ritalin if that didn’t work, then… and so on. What drugs do you take for fatigue that work?  It would be helpful to differentiate between prescription and non prescription. — Eliz. ^^^^^ "What was the middle thing… about the police?" (Otto – A Fish Called Wanda) — Eliz. ^^^^^ "What was the middle thing… about the police?" (Otto – A Fish Called Wanda)

Response:

about 5 years ago, before I was diagnosed with MS yet I was ill then; I needed to lose weight and a dr prescribed the "phenphen stuff" don’t remember which combo I had but anyway I felt great on that for the first two months.  And I even felt like my thinking was much clearer or at least I didn’t get mentally fatigued as quick.  I didn’t sleep well though.  I lost lots of weight.  But after the two months I just went to a real low of no energy, and feeling worse than ever. I mention this because I wish they had something like that but safer, because it was nice to feel like I had a full brain working again.  It is a humbling experience to meet new friends now (and w/o explaining about MS symp) have them think that I am a moron.  I used to be a programmer analyst responsible for NY, Chicago and Dallas office online systems.   I think this one of the hardest things about dealing with this illness, not wanting to tell everyone why you are like you are.  And then them thinking you are just a jerk or rude —  by that I mean, forgetting names over and over – or calling them another name.  Forgetting conversations I had with them or losing track of what they are saying and not being able to answer back or add anything because lost in what is  being said.  So that makes it look like I am not a person who cares about them and I do. I used to be quite a people person, remembering names, loving to socialize and now I pretty much stay away form others because it is not only embaraasing for me but them too.  ——  Pitty party over!!!   I really am blessed in many ways it’s just by pride and guilt that gets in the way, otherwise I’d be much better off.  I’m working on it though with the grace of God.  But is there any med’s out there like those discontinued drugs that are much safer?  Gerry Ann — — Remove the CAPS to reply  — "cocobunny" <cocobu…@shaw.ca

wrote in message

news:3BE43C49.CE5A81BA@shaw.ca… – Hide quoted text — Show quoted text -

This topic seems to come up a lot. I saw a list once, somewhere of a recommended list of drugs for fatigue – it started with Amantadine, then ritalin if that didn’t work, then… and so on. What drugs do you take for fatigue that work?  It would be helpful to differentiate between prescription and non prescription. — Eliz. ^^^^^ "What was the middle thing… about the police?" (Otto – A Fish Called Wanda)

Response:

On Sat, 03 Nov 2001 14:28:53 -0800, Carole Ford <cf…@ftconnect.com

wrote:

My neuro says I can’t work at physical labor anymore & I really need the brain to do most other things. My LTD claim is being sent for medical review again and I’m sure they are digging for a way to end the claim. I’m trying to retrain in OFFICE skills and being reminded everyday that I’ve had a big loss. That’s why I’m out of resolution & back into mourning mode. Carole

Carole,,,,,sorry  that you are back to mourning mode. This disease seems to allow each of us to hit various plateaus in our life…then BAM! back to square one again…and having to re-learn and re-adapt to the changes. Good luck w/ your re-training… Rhonda

Response:

Thank you, Jack…will talk to the doc on next appt. I have long wanted to be rid of the prozac…yet dreadfully afraid of the returning paralysis of the depression. But, he ( my psychiatrist)  has treated me w/ great care and concern off and on for 10 years now…I will trust his opinion. My depression is clinical and I do not attend therapy so this might work. We’ll see… Rhonda On Sat, 3 Nov 2001 18:28:05 -0500, "jack n dalton" – Hide quoted text — Show quoted text -<jdal…@ix.netcom.com

wrote: Rhonda Since "NADH stimulates cellular production of the neurotransmitters Dopamine, Noradrenaline, and Serotonin, thereby improving mental clarity, alertness and concentration." I would imagine any other medication that also increases these substances would be required to be adjusted to compensate for any cumulative/multiplier effect. Since ENADA(NADH) has this mechanism of action it also fights depression and provides such a feeling of energy and well being that it may be no longer necessary to take Prozac. I was taking Serzone which is Prozac type combo drug and I completely stopped taking it about 9 months ago. It was not a conscious decision. I just felt so good that it seemed stupid to take something I did not need. I did require a new Rx for mild anxiety attacks which I had when I suddenly stopped the Serzone. Since I am now retired I only need to take about two or three pills per month. I recall that they eliminated 9 people who were taking any psychotropic drugs from the study. But I believe that it was because they altered the blood test results being obtained during the pilot study. It is something that your doctor needs to review with you before you start taking ENADA. Most doctors will tell you are on your own with the non-Rx stuff. Since optimal effectiveness of ENADA is not reached about 4 weeks a tapering down of Prozac would seem appropriate. I have not seen any warning saying that this is a concern. The only side effect I notices wash that at the 10 mg level I felt a little buzz or nervousness set in. I am also taking a bucket of other things but I was able to get the benefit and no buzz at a 5 mg per day. Most people say they notice a 15% to 20% increase in energy levels. Jack since it affects serotonin, can one take it along w/ prozac? Rhonda

Response:

peggy wrote:

In article <3BE43C49.CE5A8…@shaw.ca, cocobunny <cocobu…@shaw.ca wrote: What drugs do you take for fatigue that work?  It would be helpful to differentiate between prescription and non prescription. — Eliz.

Try REST :) ( definitely non-prescription) Heather

Response:

I had to fight the short term denial, waited for months before ltd made their decision, and this is my 1st review. I’m still receiving checks but know that could end. These were separate companies which doubled the amount of paperwork I had to submit. I’m going ask about decent attorneys since mine left the area & I want someone lined up. Carole – Hide quoted text — Show quoted text -Gerry Ann wrote:

Oh my that is a hard situation.  Insurance companies are based on greed, thus the big hassle to get anything.  I had to fight for my LTD after 2 denials and final got it.  So you can still get it.  Sorry you are going through this.  Gerry Ann — — Remove the CAPS to reply  — "Carole Ford" <cf…@ftconnect.com wrote in message news:3BE46FA5.1C35974@ftconnect.com… I actually did resolve the issue & decided I would be a happy janitor. It was a way to pay the rent and have money left over for some fun. The issue became unresolved when I began having balance problems and lost my job. I found out the hard way that LTD insurance is paid only if they can’t find a way out of it….and they aren’t ethical about how they go about it. Do a search on insurance medical reviews (Dateline did an expose on State Farm) if you want to find out how unethical they can be. My neuro says I can’t work at physical labor anymore & I really need the brain to do most other things. My LTD claim is being sent for medical review again and I’m sure they are digging for a way to end the claim. I’m trying to retrain in OFFICE skills and being reminded everyday that I’ve had a big loss. That’s why I’m out of resolution & back into mourning mode. Carole Gerry Ann wrote: Carole so sorry you have had to deal with this from such a young age. That must have really been tough? Thank God there are times when you do feel normal and can get out and be around people.  I know what you mean about the yo-yo emotions about this.  But the whole thing boils down to looking back and wanting to be like we were.  When we should swallow our pride and be the best we can be now and just try to enjoy the positive about it.  For me I have thinking that says I am not as good as I once was because I was a leader, someone who others looked to for answers and such.  But that is really wrong thinking because each of us  have something important about ourselves that is useful to the good of the whole.  So I am more of a behind the scenes person now but I do feel like I have things that I do that benefit others and with that I should be happy.  But it is a great challenge when the brain doesn’t do for us what we want it is the most limiting thing of all.  Gerry Ann — — Remove the CAPS to reply  — "Carole Ford" <cf…@ftconnect.com wrote in message news:3BE46312.2517E109@ftconnect.com… Gerry Ann, Your post reads very much like my situation, except that my cog troubles started at 15. I have honor society & some testing at that time to prove I had a brain but no skilled work experience to prove I was ever bright. Sometimes I have brief periods of more  normal functioning & want to be around people during those periods. Being around people when I’m in the typical mental haze reminds me of what I lost. Of all the things that have happened in my life, losing cognitive ability has been the one thing that has caused the most sadness. I’ll get a handle on the loss and then something will remind me of the loss and I mourn again. It has been the most disabling & socially limiting symptom of all. I can no longer do physical labor and need the brain to work. Sometimes we are entitled to have our pity parties. Carole Gerry Ann wrote: about 5 years ago, before I was diagnosed with MS yet I was ill then; I needed to lose weight and a dr prescribed the "phenphen stuff" don’t remember which combo I had but anyway I felt great on that for the first two months.  And I even felt like my thinking was much clearer or at least I didn’t get mentally fatigued as quick.  I didn’t sleep well though. I lost lots of weight.  But after the two months I just went to a real low of no energy, and feeling worse than ever. I mention this because I wish they had something like that but safer, because it was nice to feel like I had a full brain working again. It is a humbling experience to meet new friends now (and w/o explaining about MS symp) have them think that I am a moron.  I used to be a programmer analyst responsible for NY, Chicago and Dallas office online systems.   I think this one of the hardest things about dealing with this illness, not wanting to tell everyone why you are like you are.  And then them thinking you are just a jerk or rude —  by that I mean, forgetting names over and over – or calling them another name.  Forgetting conversations I had with them or losing track of what they are saying and not being able to answer back or add anything because lost in what is  being said.  So that makes it look like I am not a person who cares about them and I do. I used to be quite a people person, remembering names, loving to socialize and now I pretty much stay away form others because it is not only embaraasing for me but them too.  ——  Pitty party over!!!   I really am blessed in many ways it’s just by pride and guilt that gets in the way, otherwise I’d be much better off.  I’m working on it though with the grace of God.  But is there any med’s out there like those discontinued drugs that are much safer? Gerry Ann — — Remove the CAPS to reply  — "cocobunny" <cocobu…@shaw.ca wrote in message news:3BE43C49.CE5A81BA@shaw.ca… This topic seems to come up a lot. I saw a list once, somewhere of a recommended list of drugs for fatigue – it started with Amantadine, then ritalin if that didn’t work, then… and so on. What drugs do you take for fatigue that work?  It would be helpful to differentiate between prescription and non prescription. — Eliz. ^^^^^ "What was the middle thing… about the police?" (Otto – A Fish Called Wanda)

Response:

Carole, I’ve just read your post and really feel for you. At present I’m still working full time. When I found out about the MS in 1993, I was working for an American company as a national payroll manager and I honestly believe the stress associated with the position bought on that major attack. The Sydney office has now gone and I work as an accounts supervisor chasing debtors; my desk looks a mess but I know where everything is; if anyone moves anything I’m stuffed! I’ll finish my working life out here as I know I no longer have the cog. skills to try elsewhere. I really do wish you well with your retraining. Good luck. Kathryn "Carole Ford" <cf…@ftconnect.com

wrote in message

news:3BE46FA5.1C35974@ftconnect.com… – Hide quoted text — Show quoted text -

I actually did resolve the issue & decided I would be a happy janitor. It

was a

way to pay the rent and have money left over for some fun. The issue

became

unresolved when I began having balance problems and lost my job. I found

out the

hard way that LTD insurance is paid only if they can’t find a way out of it….and they aren’t ethical about how they go about it. Do a search on insurance medical reviews (Dateline did an expose on State Farm) if you

want to

find out how unethical they can be. My neuro says I can’t work at physical labor anymore & I really need the

brain

to do most other things. My LTD claim is being sent for medical review

again and

I’m sure they are digging for a way to end the claim. I’m trying to

retrain in

OFFICE skills and being reminded everyday that I’ve had a big loss. That’s

why

I’m out of resolution & back into mourning mode. Carole Gerry Ann wrote: Carole so sorry you have had to deal with this from such a young age.

That

must have really been tough? Thank God there are times when you do feel normal and can get out and be around people.  I know what you mean about

the

yo-yo emotions about this.  But the whole thing boils down to looking

back

and wanting to be like we were.  When we should swallow our pride and be

the

best we can be now and just try to enjoy the positive about it.  For me

I

have thinking that says I am not as good as I once was because I was a leader, someone who others looked to for answers and such.  But that is really wrong thinking because each of us  have something important about ourselves that is useful to the good of the whole.  So I am more of a

behind

the scenes person now but I do feel like I have things that I do that benefit others and with that I should be happy.  But it is a great

challenge

when the brain doesn’t do for us what we want it is the most limiting

thing > > of all.  Gerry Ann > > — > > — Remove the CAPS to reply  — > > "Carole Ford" <cf…@ftconnect.com

wrote in message

> > news:3BE46312.2517E109@ftconnect.com… > > > Gerry Ann, > > > Your post reads very much like my situation, except that my cog troubles

started at 15. I have honor society & some testing at that time to prove I had

a

brain but no skilled work experience to prove I was ever bright. Sometimes I have brief periods of more  normal functioning & want to be around people during those periods. Being around people when I’m in the typical mental haze reminds me of what I lost. Of all the things that have happened in my life,

losing

cognitive ability has been the one thing that has caused the most

sadness.

I’ll get a handle on the loss and then something will remind me of the loss

and

I mourn again. It has been the most disabling & socially limiting symptom of all. I

can

no longer do physical labor and need the brain to work. Sometimes we are entitled to have our pity parties. Carole Gerry Ann wrote: about 5 years ago, before I was diagnosed with MS yet I was ill

then; I

needed to lose weight and a dr prescribed the "phenphen stuff" don’t remember which combo I had but anyway I felt great on that for the

first

two months.  And I even felt like my thinking was much clearer or at

least I

didn’t get mentally fatigued as quick.  I didn’t sleep well though.

I

lost lots of weight.  But after the two months I just went to a real low

of

no energy, and feeling worse than ever. I mention this because I wish they had something like that but

safer,

because it was nice to feel like I had a full brain working again.

It

is a humbling experience to meet new friends now (and w/o explaining

about MS

symp) have them think that I am a moron.  I used to be a programmer analyst responsible for NY, Chicago and Dallas office online systems.   I

think

this one of the hardest things about dealing with this illness, not

wanting

to tell everyone why you are like you are.  And then them thinking you

are

just a jerk or rude —  by that I mean, forgetting names over and over –

or

calling them another name.  Forgetting conversations I had with them

or

losing track of what they are saying and not being able to answer

back

or add anything because lost in what is  being said.  So that makes it

look

like I am not a person who cares about them and I do. I used to be

quite

a people person, remembering names, loving to socialize and now I

pretty

much stay away form others because it is not only embaraasing for me but

them

too.  ——  Pitty party over!!!   I really am blessed in many ways it’s just by pride and guilt that gets in the way, otherwise I’d be much better off.  I’m working on it though with the grace of God.  But is there

any > > > > med’s out there like those discontinued drugs that are much safer? > > Gerry > > > > Ann > > > > — > > > > — Remove the CAPS to reply  — > > > > "cocobunny" <cocobu…@shaw.ca

wrote in message

> > > > news:3BE43C49.CE5A81BA@shaw.ca… > > > > > This topic seems to come up a lot. > > > > > I saw a list once, somewhere of a recommended list of drugs for > > fatigue – > > > > > it started with Amantadine, then ritalin if that didn’t work, then…

and so on. What drugs do you take for fatigue that work?  It would be helpful

to

differentiate between prescription and non prescription. — Eliz. ^^^^^ "What was the middle thing… about the police?" (Otto – A Fish Called Wanda)

Response:

Oh my that is a hard situation.  Insurance companies are based on greed, thus the big hassle to get anything.  I had to fight for my LTD after 2 denials and final got it.  So you can still get it.  Sorry you are going through this.  Gerry Ann — — Remove the CAPS to reply  — "Carole Ford" <cf…@ftconnect.com

wrote in message

news:3BE46FA5.1C35974@ftconnect.com… – Hide quoted text — Show quoted text -

I actually did resolve the issue & decided I would be a happy janitor. It

was a

way to pay the rent and have money left over for some fun. The issue

became

unresolved when I began having balance problems and lost my job. I found

out the

hard way that LTD insurance is paid only if they can’t find a way out of it….and they aren’t ethical about how they go about it. Do a search on insurance medical reviews (Dateline did an expose on State Farm) if you

want to

find out how unethical they can be. My neuro says I can’t work at physical labor anymore & I really need the

brain

to do most other things. My LTD claim is being sent for medical review

again and

I’m sure they are digging for a way to end the claim. I’m trying to

retrain in

OFFICE skills and being reminded everyday that I’ve had a big loss. That’s

why

I’m out of resolution & back into mourning mode. Carole Gerry Ann wrote: Carole so sorry you have had to deal with this from such a young age.

That

must have really been tough? Thank God there are times when you do feel normal and can get out and be around people.  I know what you mean about

the

yo-yo emotions about this.  But the whole thing boils down to looking

back

and wanting to be like we were.  When we should swallow our pride and be

the

best we can be now and just try to enjoy the positive about it.  For me

I

have thinking that says I am not as good as I once was because I was a leader, someone who others looked to for answers and such.  But that is really wrong thinking because each of us  have something important about ourselves that is useful to the good of the whole.  So I am more of a

behind

the scenes person now but I do feel like I have things that I do that benefit others and with that I should be happy.  But it is a great

challenge

when the brain doesn’t do for us what we want it is the most limiting

thing > > of all.  Gerry Ann > > — > > — Remove the CAPS to reply  — > > "Carole Ford" <cf…@ftconnect.com

wrote in message

> > news:3BE46312.2517E109@ftconnect.com… > > > Gerry Ann, > > > Your post reads very much like my situation, except that my cog troubles

started at 15. I have honor society & some testing at that time to prove I had

a

brain but no skilled work experience to prove I was ever bright. Sometimes I have brief periods of more  normal functioning & want to be around people during those periods. Being around people when I’m in the typical mental haze reminds me of what I lost. Of all the things that have happened in my life,

losing

cognitive ability has been the one thing that has caused the most

sadness.

I’ll get a handle on the loss and then something will remind me of the loss

and

I mourn again. It has been the most disabling & socially limiting symptom of all. I

can

no longer do physical labor and need the brain to work. Sometimes we are entitled to have our pity parties. Carole Gerry Ann wrote: about 5 years ago, before I was diagnosed with MS yet I was ill

then; I

needed to lose weight and a dr prescribed the "phenphen stuff" don’t remember which combo I had but anyway I felt great on that for the

first

two months.  And I even felt like my thinking was much clearer or at

least I

didn’t get mentally fatigued as quick.  I didn’t sleep well though.

I

lost lots of weight.  But after the two months I just went to a real low

of

no energy, and feeling worse than ever. I mention this because I wish they had something like that but

safer,

because it was nice to feel like I had a full brain working again.

It

is a humbling experience to meet new friends now (and w/o explaining

about MS

symp) have them think that I am a moron.  I used to be a programmer analyst responsible for NY, Chicago and Dallas office online systems.   I

think

this one of the hardest things about dealing with this illness, not

wanting

to tell everyone why you are like you are.  And then them thinking you

are

just a jerk or rude —  by that I mean, forgetting names over and over –

or

calling them another name.  Forgetting conversations I had with them

or

losing track of what they are saying and not being able to answer

back

or add anything because lost in what is  being said.  So that makes it

look

like I am not a person who cares about them and I do. I used to be

quite

a people person, remembering names, loving to socialize and now I

pretty

much stay away form others because it is not only embaraasing for me but

them

too.  ——  Pitty party over!!!   I really am blessed in many ways it’s just by pride and guilt that gets in the way, otherwise I’d be much better off.  I’m working on it though with the grace of God.  But is there

any > > > > med’s out there like those discontinued drugs that are much safer? > > Gerry > > > > Ann > > > > — > > > > — Remove the CAPS to reply  — > > > > "cocobunny" <cocobu…@shaw.ca

wrote in message

> > > > news:3BE43C49.CE5A81BA@shaw.ca… > > > > > This topic seems to come up a lot. > > > > > I saw a list once, somewhere of a recommended list of drugs for > > fatigue – > > > > > it started with Amantadine, then ritalin if that didn’t work, then…

and so on. What drugs do you take for fatigue that work?  It would be helpful

to

differentiate between prescription and non prescription. — Eliz. ^^^^^ "What was the middle thing… about the police?" (Otto – A Fish Called Wanda)

Response:

Rhonda Since "NADH stimulates cellular production of the neurotransmitters Dopamine, Noradrenaline, and Serotonin, thereby improving mental clarity, alertness and concentration." I would imagine any other medication that also increases these substances would be required to be adjusted to compensate for any cumulative/multiplier effect. Since ENADA(NADH) has this mechanism of action it also fights depression and provides such a feeling of energy and well being that it may be no longer necessary to take Prozac. I was taking Serzone which is Prozac type combo drug and I completely stopped taking it about 9 months ago. It was not a conscious decision. I just felt so good that it seemed stupid to take something I did not need. I did require a new Rx for mild anxiety attacks which I had when I suddenly stopped the Serzone. Since I am now retired I only need to take about two or three pills per month. I recall that they eliminated 9 people who were taking any psychotropic drugs from the study. But I believe that it was because they altered the blood test results being obtained during the pilot study. It is something that your doctor needs to review with you before you start taking ENADA. Most doctors will tell you are on your own with the non-Rx stuff. Since optimal effectiveness of ENADA is not reached about 4 weeks a tapering down of Prozac would seem appropriate. I have not seen any warning saying that this is a concern. The only side effect I notices wash that at the 10 mg level I felt a little buzz or nervousness set in. I am also taking a bucket of other things but I was able to get the benefit and no buzz at a 5 mg per day. Most people say they notice a 15% to 20% increase in energy levels. Jack – Hide quoted text — Show quoted text -

since it affects serotonin, can one take it along w/ prozac? Rhonda

Response:

On Sat, 3 Nov 2001 13:08:47 -0800, "Michael" <muirh…@island.net

wrote: "cocobunny" <cocobu…@shaw.ca wrote in message news:3BE45A22.7A502DCB@shaw.ca… fyi cylert has been taken off the market due to liver damage.  In Canada at least. News to me… when was this removal done? Cylert (pemoline) is described in my handy 1998 CanMedAssoc MS handbook as a "newer" medication to combat fatigue.

http://www.vcn.bc.ca/chaddvan/chaddcanada/articles1.html Sale of Cylert Suspended January 2000 – Health Canada Warning: Liver complications result in withdrawal of Attention Deficit Hyperactivity Disorder drug Cylert. Health Canada is advising patients, and the parents of patients, who are using the drug Cylert (pemoline) to contact their physicians as soon as possible to discuss alternative treatments, due to the rare possibility of serious liver complications. It is important, however, that patients NOT stop taking the drug until they have discussed the matter with their doctor. [snip] — Spelling and grammatical errors are deliberate to catch copyright violators.

Hey all

Question:

Hey, G I asked my epileptologist about the grapefruit hypothesis and he actually broke out laughing. He said there is nothing wrong with grapefruit juice and AEDs. Your posts are some of the more coherant on the newsgroup. I know you didn’t make it up, but the only place I have ever seen grapefruit juice mentioned in reference to epilepsy is in your posts. Believe me, Friend, I have searched. Where did you find that information? I want to be able to tell him where you found it the next time I see him. Thanks Mark "gaross" <gar…@rogers.com

wrote in message

news:Otv5c.6360$uUx1.4357@twister01.bloor.is.net.cable.rogers.com… – Hide quoted text — Show quoted text -> "alien" <N…@NONE.com

wrote in message

> news:l1e5c.104155$Wa.71789@news-server.bigpond.net.au… > > Hey all i just read the responses to my post. i should go on further from

what i stated. Im 22 now, I am male (not female which was talked about hehe) a law student, doing well i guess, I dont believe my parents have ever neglected me, as a child i was taken to doctors and so on, I was taken

for

the "episodes" but I never had an EEG (so if anyone was neglecting me, that is if there really is a problem, it was the doctors not my parents) but the doctors never seemed too concerned and never refered me to a

neurologist.

Ive only ever been to a psychatrist. I do believe I am still having

these

"episodes" or whatever they are as I think i had a few today even (like

i

will be talking stop in mid sentence and then start again, i feel like

im

missing time, is that common or is that a symptom at all? It scares me when this happens as it happens sometimes while i drive.) *** Another thing I thought rereading above (you can Still use the

Websites

I posted earlier), a sense of ‘lost time’ but where you remain conscious (though ‘away’ for short periods), might be what are described under

Simple

Partial Seizures (which include ‘Absences’).   Those can vary from brief (seconds) to longer (5-10 minutes for example).  That’s another reason why those could cause problems with Driving, as well as other things which

might

require attentiveness.     Most of us, for example, use electric kettles that have an Auto-off Feature, rather than the older style that boil until removed from the

stove.

Lots of others also use a Microwave Oven to reheat dinners, or for general cooking, rather than a stovetop method.  (Many of those safety features

are

included under Julie’s Idaho website I posted before, under the Tips and Tricks part, that people have contributed to.)    That site can be extremely useful, since it’ll save you ‘reinventing

the

wheel’ if your symptoms or condition is similar to people who have contributed to that site.   There are many Safety and Seizures ideas, some that you might not even have thought of if you’re new to this diagnosis.    I had a problem with short to medium-term memory, so had to develop a

way

to make sure I took the pills I use on the schedule prescribed, *but

didn’t

take *2 doses by mistake, since Either could produce problems I didn’t

need.

   Others on the group like to swim.  (I swim like a stone!)   For them, there’s information on safety in the water, Plus First Aid for Seizures in the water.    Like I said earlier, if you are now prescribed Neurontin?  and didn’t

get

a writeup from your Pharmacist about possible side effects or conflicts,

the

Medications Glossary has most of the common Anti-Ep Drugs (AEDs) listed

with

a printable summary page.   (Tegretol, for example, that I use, can be compromised by both Alcohol and Grapefruit Juice.  Someone not knowing

that

could have ‘breakthrough seizures’  (my word) and not realize it was a

glass

of Grapefruit Juice they had with Breakfast that caused the problem.)    With Most of the AEDs it’s important to follow the schedule that your Doctor has set for taking it.  Some of them (Tegretol for one) do strange things if the Dosing rate is interrupted by forgetting some doses, OR by taking 2 doses by mistake.   Those are the sort of information that’s available on the efa.org site and Julie or Dave’s sites.    Also, if they do Bloodwork to check for medication levels and you’re

not

using it at the rate the Doctor set, they might Increase your dose if your Blood Levels are Low on a test, and then you’d end up taking more than the target dose.   Either extreme can cause unnecessary loss of seizure

control.

   Some other things I thought about when I reread your post.  (*I haven’t used Neurontin, but others around here have, if you have specific

questions

or problems using it.  Often the Med. type will vary depending on the Seizure type and which part of the Brain is active during a particular seizure.   Each medication is designed to take the extremes off the

’spikes’

and stabilize whatever might be triggering the seizures.)    I guess we’ll wait until if they do an EEG etc.  Some people need more than one, since the EEG only measures erratic electrical signals *if a seizure happens during the test.  (They have things they do to try trigger

a

minor one.)  If they’re able to see any erratic electrical activity then they can more specifically target the newer Meds. for the particular type. Some people don’t show anything, but most of us did the first time.  G./ I just wanted to clear things up. Ill let you guys know what my doctor says and if i do get an EEG or whatever test i might be getting. If my Psychatrist thinks its nothing to worry about do you guys think i should persue it further with my local GP? Chris :)

Response:

g’day mark, strangely enough it was my pharmacist who told me to avoid grapefruit juice while taking tegretol. she also said it will effect some high blood pressure medications. i think i’ll bow to her judgement. most doctor’s only know basic information about medications, although i would expect a specialist to have more knowledge in that field, particularly those which pertain to his/her field. pablo "mark stamey" <msta…@nyc.rr.com

wrote in message

news:lGi7c.3215$DV6.2098@twister.nyc.rr.com… – Hide quoted text — Show quoted text -

Hey, G I asked my epileptologist about the grapefruit hypothesis and he actually broke out laughing. He said there is nothing wrong with grapefruit juice

and

AEDs. Your posts are some of the more coherant on the newsgroup. I know you

didn’t

make it up, but the only place I have ever seen grapefruit juice mentioned in reference to epilepsy is in your posts. Believe me, Friend, I have searched. Where did you find that information? I want to be able to tell him where

you

found it the next time I see him. Thanks Mark

Response:

There doesn’t seem to be much research on the effects of grapefruit juice interaction with anti-epileptic drugs, however one paper did find that grapefuit juice does lead to increased blood levels of Tegretol, perhaps by inhibit the enzyme which breaks down Tegretol (CYP 3A4), although they didn’t specifically look at this.  The product information from Novartis does say that CYP 3A4 inhibitors may increase Tegretol blood levels and they list several drugs which may do this.  They don’t specifically mention grapefruit juice but it’s probably a good idea not to ingest anything which may alter Tegretol levels. http://www.pharma.us.novartis.com/product/pi/pdf/tegretol.pdf I think pharmacists probably get a lot more training in drug interactions and mechanisms than doctors do.  I know that at our medical school that’s certainly the case with respect to epilepsy and anti-epileptic drugs (AEDs), since I’ve been running their epilepsy and AED laboratory.  :-) "Pablo" <iancoffey…@bigpond.com.au

wrote in message

news:WUo7c.118850$Wa.41979@news-server.bigpond.net.au… – Hide quoted text — Show quoted text -

g’day mark, strangely enough it was my pharmacist who told me to avoid grapefruit

juice

while taking tegretol. she also said it will effect some high blood

pressure

medications. i think i’ll bow to her judgement. most doctor’s only know basic information about medications, although i would expect a specialist to have more knowledge in that field,

particularly > those which pertain to his/her field. > pablo > "mark stamey" <msta…@nyc.rr.com

wrote in message

> news:lGi7c.3215$DV6.2098@twister.nyc.rr.com… > > Hey, G > > I asked my epileptologist about the grapefruit hypothesis and he actually

broke out laughing. He said there is nothing wrong with grapefruit juice and AEDs. Your posts are some of the more coherant on the newsgroup. I know you didn’t make it up, but the only place I have ever seen grapefruit juice

mentioned

in reference to epilepsy is in your posts. Believe me, Friend, I have searched. Where did you find that information? I want to be able to tell him where you found it the next time I see him. Thanks Mark

Response:

When I get my Tegretol at the pharmacy, the patient info sheet they give me says to avoid grapefruit and grapefruit juice. I believe it is only Tegretol that interacts with it, not other AEDs. "mark stamey" <msta…@nyc.rr.com

wrote in message

news:lGi7c.3215$DV6.2098@twister.nyc.rr.com… – Hide quoted text — Show quoted text -

Hey, G I asked my epileptologist about the grapefruit hypothesis and he actually broke out laughing. He said there is nothing wrong with grapefruit juice

and

AEDs. Your posts are some of the more coherant on the newsgroup. I know you

didn’t

make it up, but the only place I have ever seen grapefruit juice mentioned in reference to epilepsy is in your posts. Believe me, Friend, I have searched. Where did you find that information? I want to be able to tell him where

you > found it the next time I see him. > Thanks > Mark > "gaross" <gar…@rogers.com

wrote in message

> news:Otv5c.6360$uUx1.4357@twister01.bloor.is.net.cable.rogers.com… > > "alien" <N…@NONE.com

wrote in message

> > news:l1e5c.104155$Wa.71789@news-server.bigpond.net.au… > > > Hey all i just read the responses to my post. i should go on further > from > > > what i stated. Im 22 now, I am male (not female which was talked about > > hehe) > > > a law student, doing well i guess, I dont believe my parents have ever > > > neglected me, as a child i was taken to doctors and so on, I was taken > for > > > the "episodes" but I never had an EEG (so if anyone was neglecting me, > > that > > > is if there really is a problem, it was the doctors not my parents) but

the doctors never seemed too concerned and never refered me to a neurologist. Ive only ever been to a psychatrist. I do believe I am still having these "episodes" or whatever they are as I think i had a few today even

(like

i will be talking stop in mid sentence and then start again, i feel like im missing time, is that common or is that a symptom at all? It scares me when this happens as it happens sometimes while i drive.) *** Another thing I thought rereading above (you can Still use the Websites I posted earlier), a sense of ‘lost time’ but where you remain conscious (though ‘away’ for short periods), might be what are described under Simple Partial Seizures (which include ‘Absences’).   Those can vary from brief (seconds) to longer (5-10 minutes for example).  That’s another reason

why

those could cause problems with Driving, as well as other things which might require attentiveness.     Most of us, for example, use electric kettles that have an Auto-off Feature, rather than the older style that boil until removed from the stove. Lots of others also use a Microwave Oven to reheat dinners, or for

general

cooking, rather than a stovetop method.  (Many of those safety features are included under Julie’s Idaho website I posted before, under the Tips and Tricks part, that people have contributed to.)    That site can be extremely useful, since it’ll save you ‘reinventing the wheel’ if your symptoms or condition is similar to people who have contributed to that site.   There are many Safety and Seizures ideas,

some

that you might not even have thought of if you’re new to this diagnosis.    I had a problem with short to medium-term memory, so had to develop a way to make sure I took the pills I use on the schedule prescribed, *but didn’t take *2 doses by mistake, since Either could produce problems I didn’t need.    Others on the group like to swim.  (I swim like a stone!)   For them, there’s information on safety in the water, Plus First Aid for Seizures

in

the water.    Like I said earlier, if you are now prescribed Neurontin?  and didn’t get a writeup from your Pharmacist about possible side effects or conflicts, the Medications Glossary has most of the common Anti-Ep Drugs (AEDs) listed with a printable summary page.   (Tegretol, for example, that I use, can be compromised by both Alcohol and Grapefruit Juice.  Someone not knowing that could have ‘breakthrough seizures’  (my word) and not realize it was a glass of Grapefruit Juice they had with Breakfast that caused the problem.)    With Most of the AEDs it’s important to follow the schedule that your Doctor has set for taking it.  Some of them (Tegretol for one) do

strange

things if the Dosing rate is interrupted by forgetting some doses, OR by taking 2 doses by mistake.   Those are the sort of information that’s available on the efa.org site and Julie or Dave’s sites.    Also, if they do Bloodwork to check for medication levels and you’re not using it at the rate the Doctor set, they might Increase your dose if

your

Blood Levels are Low on a test, and then you’d end up taking more than

the

target dose.   Either extreme can cause unnecessary loss of seizure control.    Some other things I thought about when I reread your post.  (*I

haven’t

used Neurontin, but others around here have, if you have specific questions or problems using it.  Often the Med. type will vary depending on the Seizure type and which part of the Brain is active during a particular seizure.   Each medication is designed to take the extremes off the ’spikes’ and stabilize whatever might be triggering the seizures.)    I guess we’ll wait until if they do an EEG etc.  Some people need

more

than one, since the EEG only measures erratic electrical signals *if a seizure happens during the test.  (They have things they do to try

trigger

a minor one.)  If they’re able to see any erratic electrical activity then they can more specifically target the newer Meds. for the particular

type.

Some people don’t show anything, but most of us did the first time.  G./ I just wanted to clear things up. Ill let you guys know what my doctor says and if i do get an EEG or whatever test i might be getting. If my Psychatrist thinks its nothing to worry about do you guys think i

should

persue it further with my local GP? Chris :)

Response:

Dear Alien In the epilepsy club a neurologist is like a general practitioner. They deal with epilepsy and other related disorders.  Despite the roars of execration I expect from this post, I have found them to be the equivalent of a country doctor who generalizes in a variety of medical problems including epilepsy, but do not specialize in the subject. You may want to consult an "epileptologist". An epileptologist can address your problem without a lot of false steps. All they do is treat people with epilepsy. They are specialists. Some larger hospitals have epilepsy centers within them. You can find them on line. You will get relief quicker at a specialist. You may even be driving sooner than you thought you would be after reading the other posts and listening to your old doctor. Good luck. Stay strong. Mark "alien" <N…@NONE.com

wrote in message

news:Wrv5c.105287$Wa.101424@news-server.bigpond.net.au… – Hide quoted text — Show quoted text -> Thanks heaps i will definatly be seeing a neurologist now. > take care > chris > "Julie" <IDefi…@netscape.net

wrote in message

> news:40560828.2F993333@netscape.net… > > Chris, I strongly agree with Bob.  Please see a neurologist and tell your

family and friends that you will not be driving until you have this possible

seizure

activity under control.  Please consider your own safety and that of others. I cringe when I hear on the news that a bus driver had a seizure and caused an accident.  When people hear these reports they think that no one with epilepsy should be driving.  But many of us have our seizures under control and

we

want to keep our driving privileges. Please read the second experience on our website, which was submitted by Kathryn from Massachusetts.  She shared a very valuable experience about driving with uncontrolled seizures.  http://www.epilepsyidaho.org/experience.htm I am  truly concerned about your safety. Concerning your parents care for you when you were younger, they may not have been aware of what was going on.  I didn’t tell my parents about every time I had a seizure.  I didn’t know I was having seizures, I just knew strange

things

were happening and I thought I fainted alot.  Don’t worry about anyone

placing

blame. Focus on taking care of now and your future. It does sound to me like you are having seizures.  If that is the case, help your parents to get all the knowledge available so they can be involved in empowering you to cope with a seizure disorder. Take care, Julie Walton, Volunteer Webmaster Epilepsy Foundation of Idaho http://www.epilepsyidaho.org Bob wrote: alien wrote: Hey all i just read the responses to my post. i should go on further from what i stated. Im 22 now, I am male (not female which was talked

about

hehe) a law student, doing well i guess, I dont believe my parents have

ever

neglected me, as a child i was taken to doctors and so on, I was

taken

for the "episodes" but I never had an EEG (so if anyone was neglecting

me,

that is if there really is a problem, it was the doctors not my parents) but the doctors never seemed too concerned and never refered me to a neurologist. Ive only ever been to a psychatrist. As I said in regard to myself, I went to psychiatrists for many years thinking that they were the right kind of doctor to be treating the "feelings" that I had. As a layperson, I had no way of knowing better. You & your

parents

are now in the same situation. Let me repeat what I said before – See a Neurologist! I do believe I am still having these "episodes" or whatever they are as I think i had a few today even (like i will be talking stop in mid sentence and then start again, i feel

like

im missing time, is that common or is that a symptom at all? It scares

me

when this happens as it happens sometimes while i drive.) Those are probably what are called Complex Partial Seizures. You

should

NOT BE DRIVING! You may kill somebody with your car during one of your seizures.  It’s happened many times with a condition like yours that is obviously not controlled by your medications. Honestly my parents have done the best they could do, I was always sick as a child and ive been to countless doctors for all sorts of problems. I’m sure your parents have acted in good faith. The doctors have let them down, but it’s not your parents’ fault. Im just perplexed by the posibility now that i might be having seizures of some sort. Why isnt the depakote stopping them? Finding the right medication is always a problem. We’ve all been

through

that process. I’ve tried many meds that didn’t help at all just like many others here have. As for my mood, im still having manic and depressive episodes so im still cycling, dont know what to do there. My doc might be adding Neuotin(sp?) to my medication mix. That would be Neurontin, but you are seeeing the wrong doctor. How do

I

get you to understand that you need to see a Neurologist? Honestly, i have great, caring and wonderful parents, i couldnt have asked for better parents. I feel really bad that some of you feel as if I was neglected by them as a child as they have never neglected me. And

they

have also been through so much themselves (my mother has a heart

condition,

and was at an early age (in her twenties, when i was 3 years old) hurt

by

a severe work related back injury. I’m sure you have wonderful parents. There was just a brief misunderstanding here. I just wanted to clear things up. Ill let you guys know what my

doctor

says and if i do get an EEG or whatever test i might be getting. If my Psychatrist thinks its nothing to worry about do you guys think i should persue it further with my local GP? You need to see a Neurologist! You should not be treated by a psychiatrist! I sure wish that I could get that message across to you. Chris :) Bob

Response:

http://www.nfld.net/epilepsy/drugs/carbamazepine.html   (TELL YOUR DOCTOR that Carbamazepine is the Medical Generic term for Tegretol).    Scroll down about 55% of the way, to  Below title? –

 "How should I

take carbamazepine".    If you want a Printable version, they don’t have Page Breaks nicely laid out like Julie etc. do, you might have to Forward Inline to yourself, then Edit out all the Trash before it’s sent, except source and Text I described above that was needed, to get to specific information on Tegretol.    I doubt he’d come up from Rolling on the Floor.    How hard is it for you to get a Referral to a Trained Doctor??    I’m frightened that *I have to do his Research for him.  How much would he bill ME for that hour I spent?    I don’t know why that’s not on the EFA Main site under Medications.  That was back in 1999 that I found that (in my case) and This  took *me 50 minutes to search out,   while your Dr. is rolling on the Floor Laughing.    You should consider finding a Doctor who knows what he’s doing.   G.R. / ****************************************************************** "mark stamey" <msta…@nyc.rr.com

wrote in message

news:lGi7c.3215$DV6.2098@twister.nyc.rr.com… – Hide quoted text — Show quoted text -

Hey, G I asked my epileptologist about the grapefruit hypothesis and he actually broke out laughing. He said there is nothing wrong with grapefruit juice

and

AEDs. Your posts are some of the more coherant on the newsgroup. I know you

didn’t

make it up, but the only place I have ever seen grapefruit juice mentioned in reference to epilepsy is in your posts. Believe me, Friend, I have searched. Where did you find that information? I want to be able to tell him where

you > found it the next time I see him. > Thanks > Mark > "gaross" <

wrote in message

> news:Otv5c.6360$uUx1.4357@twister01.bloor.is.net.cable.rogers.com… > >****** Took out older unrelated stuff *** > >    Like I said earlier, if you are now prescribed Neurontin?  and didn’t get

a writeup from your Pharmacist about possible side effects or conflicts,

the

Medications Glossary has most of the common Anti-Ep Drugs (AEDs) listed

with

a printable summary page.

  (Tegretol, for example, that I use, can be – Hide quoted text — Show quoted text -

compromised by both Alcohol and ****Grapefruit Juice. *****  Someone not

knowing that

could have ‘breakthrough seizures’  (my word) and not realize it was a

glass

of Grapefruit Juice they had with Breakfast that caused the problem.)    With Most of the AEDs it’s important to follow the schedule that your Doctor has set for taking it.  Some of them (Tegretol for one) do

strange

things if the Dosing rate is interrupted by forgetting some doses, OR by taking 2 doses by mistake.   Those are the sort of information that’s available on the efa.org site and Julie or Dave’s sites.    Also, if they do Bloodwork to check for medication levels and you’re

not

using it at the rate the Doctor set, they might Increase your dose if

your

Blood Levels are Low on a test, and then you’d end up taking more than

the

target dose.   Either extreme can cause unnecessary loss of seizure

control.

   Some other things I thought about when I reread your post.  (*I

haven’t

used Neurontin, but others around here have, if you have specific

questions

or problems using it.  Often the Med. type will vary depending on the Seizure type and which part of the Brain is active during a particular seizure.   Each medication is designed to take the extremes off the

’spikes’

and stabilize whatever might be triggering the seizures.)    G./

Response:

Howdy! The best neuro that I ever had for my epilepsy just picked up his shingle and started to specialize in Alzheimers. Guess he was just the best because he really listened, understood that I was not a moron and treated me like a whole person! Personally I don’t care how specialized they are — if they are unwilling to communicate with me, understand that my IQ isn’t 47 and treat me as a person (not just a patient) then IMO they are just about useless! As for grapefruit.  That isn’t all AEDs (so I’ve been told) just tegretol and it’s cousins (like triliptal) because of chemical reactions that inhibit the drugs effectiveness. — Dave

ASHM Forever!

Question:

ASHM Forever! I got to thinking the other day that things really have been peaceful around ASHM for quite a while now. I hope it isn’t bad luck to say this.  I have had only one brief experience with a news group other than ASHM. The one I did visit (over a year ago) was called ASC-P (I believe that’s the right  designation). I made less than a dozen posts there before I found out that it was a place — at least then — where the pain suffered by the subscribers was nearly matched by the pain they inflicted on one another. Perhaps it’s not still that way — I hope not. I may have come and gone at a bad time, but I promise you that I don’t want to go back to find out. Although conflict never was much of a problem with us, there have been a few isolated moments. With this in mind, I decided this morning to look at some old ASHM threads to see how well, or how poorly, we have handled unrest within OUR group in the past. Most of our posts are available on Google’s archives at <http://groups.google.com and, since the various threads can’t be sorted between "Conflict" and "Non-Conflict" I had to make some random stabs before I found what I wanted. I was looking for an instance where a potential flame war had been averted by civility, and I think I got lucky. The thread I stumbled on was entitled "NOT!!!! joining the group" and reading through it made me proud to be associated with ASHM. The thread runs to 34 posts. It is dated November 1998. A lot of the contributors are no longer posting with us, but they have been replaced in kind. I have included all 34 posts (below). Most of you won’t want to labor through the whole thing, but here it is for reading in detail, or for sampling, whichever you like.  After reading it, my own conclusion was, and is, that we are a civilized, superb group of extraordinarily intelligent, appreciative, compassionate, and concerned people (did I miss  "perceptive"?), and why someone has not long since organized a parade in our honor is beyond me. I can hear _Stars and Stripes Forever_ and _76 Trombones_ even as I write. I realize that such self-congratulatory praise as this risks drawing in a night crawler or two from the outside. If that happens you have my sincere apology, but it wouldn’t change a thing with such a civilized group as US!. I have left the dialog untouched. Where I felt a need to comment, I have included same in brackets. BobB MESSAGE 1 in thread I have been lurking here for more than a month. I thought this was somewhere I could find support for conditions I will not describe.  I have suffered for most of my life alone, I can continue to do so.  I have enough trouble with neighbors and family that I will not expose myself to a bunch of flaming strangers. [By "a bunch of flaming strangers" twxtt meant us. I do not know what occasioned her resentment. From what I have observed OUTSIDE  ASHM however, such a post would most likely have signaled the start of a free-for-all. --- bb] MESSAGE 2 in thread I have been lurking here for more than a month. I thought this was somewhere I could find support for conditions I will not describe.  I have suffered for most of my life alone, I can continue to do so.  I have enough trouble with neighbors and family that I will not expose myself to a bunch of flaming strangers.

Very sensible decision not to expose yourself to a bunch of flaming strangers! But many of us wouldn’t be strangers if you got to know us ; ). You can still find support for headaches, and will most certainly learn a great deal about medication treatments and options if you continue to read our ng. I wish you well Anne "You must see the infinite, i.e., the universal,  in your particular, or it is only gossip."–O.W.Holmes, Jr. MESSAGE 3 in thread I have been lurking here for more than a month. I thought this was somewhere I could find support for conditions I will not describe.

Can only assume then that they are related to headache somehow or another.  One of the great things about ASHM is our ability to not only find support, but give it to others as well. I have suffered for most of my life alone, I can continue to do so.  I have enough trouble with neighbors and family that I will not expose myself to a bunch of flaming strangers.

Actually, I hadn’t noticed a "bunch" of flaming strangers here…a couple of people having a dispute,  yes. It’s a shame that after more than a month of lurking here you weren’t able to see beyond the current circumstances to notice all of the sharing, caring, concern and occasional humor that abounds here as well.  Since you’ve suffered like so many of us, you probably could have gotten and given much here. I hope you will reconsider.  Wishing you many pain- free days ahead. Judy "Close your eyes and surrender to your darkest dreams! Purge your thoughts of the life you knew before! Close your eyes, let your spirit start to soar! And you’ll live as you’ve never lived before . . ." MESSAGE 4 in thread Please just take a deep breath .. Shake your head but stay with us.  If you think that the ng is a little off center now wait until after Christmas when I find out someone got a bigger and better present than I did…  :) Good Luck… RonMum Queen Of Hugs Don"t Be Reckless With Other Peoples Hearts… Don’t Put Up With People Who Are Reckless With YOURS MESSAGE 5 in thread Actually, I hadn’t noticed a "bunch" of flaming strangers here…a couple of people having a dispute,  yes. It’s a shame that after more than a month of lurking here you weren’t able to see beyond the current circumstances to notice all of the sharing, caring, oncern and occasional humor that abounds here as well.  Since you’ve suffered like so many of us, you probably could have gotten and given much here. I hope you will reconsider.  Wishing you many pain- free days ahead. Judy

Very well said Toty MESSAGE 6 in thread

In all honesty, I have to ask:  "So what’s your point?" Because really, there are a lot of us here who love coming together and talking, sharing supporting, laughing and occasionally, there is a Flame war. But do ya know what? there’s this neat option in newsgroups that allows you to filter out unwanted posts…such as flame wars. So if our humble group isn’t good enough for you, then by all means, please don’t join us. How many people lurk and then decide against joining? They don’t care to post such things. In my humble opinion, it’s the likes of you that would start a flame war and make us all sick. Have a HAPPY DAY.   :0) Pooh (with a scarcastic smile on her face, but really doesn’t care) They told me I was crazy.  I looked the clowns right in the eye and laughed. MESSAGE 7 in thread ALRIGHT, I will keep my feelings to myself and just go back to lurking. I have been in severe pain and my mood is not one that should ever be on line with any group.  And I guess Pooh has the same nasty attitude right now.  Sorry about that all, just don’t pay attention to me any longer, just like she said. MESSAGE 8 in thread ALRIGHT, I will keep my feelings to myself and just go back to lurking. I have been in severe pain and my mood is not one that should ever be on line with any group.  And I guess Pooh has the same nasty attitude right now.  Sorry about that all, just don’t pay attention to me any longer, just like she said.

Again, why not dwell on all the positive posts here asking you to stay?  If you go looking for negatives, you will certainly find them.  Why not reconsider and introduce yourself…there’s plenty of us who would like to get to know you :) Judy "Close your eyes and surrender to your darkest dreams! Purge your thoughts of the life you knew before! Close your eyes, let your spirit start to soar! And you’ll live as you’ve never lived before . . ." MESSAGE 9 in thread Again, why not dwell on all the positive posts here asking you to stay?  If you go looking for negatives, you will certainly find them.  Why not reconsider and introduce yourself…there’s plenty of us who would like to get to know you :)

She’s right, there are plenty of us here to offer you support.  We all understand pain.  Look for the positive. It’s what we all have to do to get through life.  Let us get to know you. Amy MESSAGE 10 in thread twixtt said:ALRIGHT, I will keep my feelings to myself and just go back to lurking. I can’t think of a better place to be if you are in pain and feeling isolated. Just think of how many of us have responded to your posts.  A lot of people here are very caring and concerned about the welfare of perfect strangers, which says something pretty nice about the people who post here. MESSAGE 11 in thread – Hide quoted text — Show quoted text – ALRIGHT, I will keep my feelings to myself and just go back to lurking. I have been in severe pain and my mood is not one that should ever be on line with any group.  And I guess Pooh has the same nasty

… read more »

Response:

Iagree Bob, & Lavonne ! This group has been such a blessing to  me. I know that I have  had my share of spouts, or too much whining but hey Im only human. Before i  found this group  thouh it was harder for me to deal w/ the pain. ASHM Forever!

MM – Hide quoted text — Show quoted text – I got to thinking the other day that things really have been peaceful around ASHM for quite a while now. I hope it isn’t bad luck to say this.  I have had only one brief experience with a news group other than ASHM. The one I did visit (over a year ago) was called ASC-P (I believe that’s the right designation). I made less than a dozen posts there before I found out that it was a place — at least then — where the pain suffered by the subscribers was nearly matched by the pain they inflicted on one another. Perhaps it’s not still that way — I hope not. I may have come and gone at a bad time, but I promise you that I don’t want to go back to find out. Although conflict never was much of a problem with us, there have been a few isolated moments. With this in mind, I decided this morning to look at some old ASHM threads to see how well, or how poorly, we have handled unrest within OUR group in the past. Most of our posts are available on Google’s archives at <http://groups.google.com and, since the various threads can’t be sorted between "Conflict" and "Non-Conflict" I had to make some random stabs before I found what I wanted. I was looking for an instance where a potential flame war had been averted by civility, and I think I got lucky. The thread I stumbled on was entitled "NOT!!!! joining the group" and reading through it made me proud to be associated with ASHM. The thread runs to 34 posts. It is dated November 1998. A lot of the contributors are no longer posting with us, but they have been replaced in kind. I have included all 34 posts (below). Most of you won’t want to labor through the whole thing, but here it is for reading in detail, or for sampling, whichever you like.  After reading it, my own conclusion was, and is, that we are a civilized, superb group of extraordinarily intelligent, appreciative, compassionate, and concerned people (did I miss  "perceptive"?), and why someone has not long since organized a parade in our honor is beyond me. I can hear _Stars and Stripes Forever_ and _76 Trombones_ even as I write. I realize that such self-congratulatory praise as this risks drawing in a night crawler or two from the outside. If that happens you have my sincere apology, but it wouldn’t change a thing with such a civilized group as US!. I have left the dialog untouched. Where I felt a need to comment, I have included same in brackets. BobB Thank you, BobB, for that wonderful trip down courtesy lane! I’ve always felt sincere pride and great appreciation to be with ASHM.  When i’m down, you folks lift me up.  When i’m down and need to help others, ASHM provides that opportunity as well.  One of the most vital virtues that ASHM almost always keeps is that we don’t allow our pain to be an excuse to let our respect fly out the window.  Even if we think another is being silly or whatever, we keep civil.  We remember that, at the end of the day, we are all on the SAME side.  The enemy is pain, not each other.  ASHM folks know more about me than some of my family members do because i can be more intimate with you folks than i can with some of my relatives.  There is a core honesty i can keep here due to the distance and knowledge that i probably will never bump into anyone here at the local store.  We can be more "naked" and exposed cuz we can’t really embarrass ourselves here.  No, i know we can here, but when i turn my computer off and have to deal with the rest of the world, i know that nothing i’ve shared here is gonna point its finger at me at WalMart and shame me….well, there anyway :-) ASHM is a safe society for me.  One of pain’s most powerful weapons is isolation. I don’t have to worry about not being able to shower today, but needing human interaction. (I’ve realized that i still need actually human contact but that’s another story.)  I come here and someone has provided some giggles that i need desperately.  I come here feeling well and someone needs a hand reached out to them to let them know that they are not the lone tolerance freak their medico has made them out to be.  Someone’s grandmother has posted her concern about her granddaughter’s increasingly imposing migraines and needs to know that the girl’s dr is going in the right direction.  Someone posts their bizarre reaction to a med and has been told that they are the only person on the planet that has had that side effect and needs to be assured that thirteen of us have had the same reaction.  All these someones don’t know where else to turn.  So they come to us….and we can comfort or assure a good deal of them.  Some stay to be one of us.  Some never post, but lurk regularly. You’re right, BobB.  This ASHM is a darn fine place to be!  Thank you for the reminder! Deep peace, Lavon

Response:

– Hide quoted text — Show quoted text – ASHM Forever! I got to thinking the other day that things really have been peaceful around ASHM for quite a while now. I hope it isn’t bad luck to say this.  I have had only one brief experience with a news group other than ASHM. The one I did visit (over a year ago) was called ASC-P (I believe that’s the right designation). I made less than a dozen posts there before I found out that it was a place — at least then — where the pain suffered by the subscribers was nearly matched by the pain they inflicted on one another. Perhaps it’s not still that way — I hope not. I may have come and gone at a bad time, but I promise you that I don’t want to go back to find out. Although conflict never was much of a problem with us, there have been a few isolated moments. With this in mind, I decided this morning to look at some old ASHM threads to see how well, or how poorly, we have handled unrest within OUR group in the past. Most of our posts are available on Google’s archives at <http://groups.google.com and, since the various threads can’t be sorted between "Conflict" and "Non-Conflict" I had to make some random stabs before I found what I wanted. I was looking for an instance where a potential flame war had been averted by civility, and I think I got lucky. The thread I stumbled on was entitled "NOT!!!! joining the group" and reading through it made me proud to be associated with ASHM. The thread runs to 34 posts. It is dated November 1998. A lot of the contributors are no longer posting with us, but they have been replaced in kind. I have included all 34 posts (below). Most of you won’t want to labor through the whole thing, but here it is for reading in detail, or for sampling, whichever you like.  After reading it, my own conclusion was, and is, that we are a civilized, superb group of extraordinarily intelligent, appreciative, compassionate, and concerned people (did I miss  "perceptive"?), and why someone has not long since organized a parade in our honor is beyond me. I can hear _Stars and Stripes Forever_ and _76 Trombones_ even as I write. I realize that such self-congratulatory praise as this risks drawing in a night crawler or two from the outside. If that happens you have my sincere apology, but it wouldn’t change a thing with such a civilized group as US!. I have left the dialog untouched. Where I felt a need to comment, I have included same in brackets. BobB

Thank you, BobB, for that wonderful trip down courtesy lane! I’ve always felt sincere pride and great appreciation to be with ASHM.  When i’m down, you folks lift me up.  When i’m down and need to help others, ASHM provides that opportunity as well.  One of the most vital virtues that ASHM almost always keeps is that we don’t allow our pain to be an excuse to let our respect fly out the window.  Even if we think another is being silly or whatever, we keep civil.  We remember that, at the end of the day, we are all on the SAME side.  The enemy is pain, not each other.  ASHM folks know more about me than some of my family members do because i can be more intimate with you folks than i can with some of my relatives.  There is a core honesty i can keep here due to the distance and knowledge that i probably will never bump into anyone here at the local store.  We can be more "naked" and exposed cuz we can’t really embarrass ourselves here.  No, i know we can here, but when i turn my computer off and have to deal with the rest of the world, i know that nothing i’ve shared here is gonna point its finger at me at WalMart and shame me….well, there anyway :-) ASHM is a safe society for me.  One of pain’s most powerful weapons is isolation. I don’t have to worry about not being able to shower today, but needing human interaction. (I’ve realized that i still need actually human contact but that’s another story.)  I come here and someone has provided some giggles that i need desperately.  I come here feeling well and someone needs a hand reached out to them to let them know that they are not the lone tolerance freak their medico has made them out to be.  Someone’s grandmother has posted her concern about her granddaughter’s increasingly imposing migraines and needs to know that the girl’s dr is going in the right direction.  Someone posts their bizarre reaction to a med and has been told that they are the only person on the planet that has had that side effect and needs to be assured that thirteen of us have had the same reaction.  All these someones don’t know where else to turn.  So they come to us….and we can comfort or assure a good deal of them.  Some stay to be one of us.  Some never post, but lurk regularly. You’re right, BobB.  This ASHM is a darn fine place to be!  Thank you for the reminder! Deep peace, Lavon

Response:

What? Was I sick that day or on KP??? LOL That was quite a group of people back then. (not that the current group isn’t) I’m glad we were able to rehab most of them and help them re-enter society and go on to lead happy normal lives. I want to know who gave the bad reference to the parole board about me. Last I heard they were enforcing my life sentence. Just ain’t fair I tell ya!! BobW thanks BobB

– Hide quoted text — Show quoted text – ASHM Forever!

Response:

how eloquent as always Bob!  I remember other such discussions where this group was able to pull together despite adversity, convincing others and ourselves that we truly are a wonderful group of people.  ASHM is the first newsgroup I ever tried, back when I was having migs every single day and was locked in my apartment by the pain and ASHM was all there was.  There was a Magic Bus going on then, and they let me hitch a ride, never questioning my newsgroup ignorance.  I never got so many cyber hugs, and have been here ever since, though sometimes only in the background! Thanks everyone – and you too Bob for reminding us of our unity and love. Jane in AZ *Courage is the power to let go of the familiar*

– Hide quoted text — Show quoted text – ASHM Forever! I got to thinking the other day that things really have been peaceful around ASHM for quite a while now. I hope it isn’t bad luck to say this.  I have had only one brief experience with a news group other than ASHM. The one I did visit (over a year ago) was called ASC-P (I believe that’s the right designation). I made less than a dozen posts there before I found out that it was a place — at least then — where the pain suffered by the subscribers was nearly matched by the pain they inflicted on one another. Perhaps it’s not still that way — I hope not. I may have come and gone at a bad time, but I promise you that I don’t want to go back to find out. Although conflict never was much of a problem with us, there have been a few isolated moments. With this in mind, I decided this morning to look at some old ASHM threads to see how well, or how poorly, we have handled unrest within OUR group in the past. Most of our posts are available on Google’s archives at <http://groups.google.com and, since the various threads can’t be sorted between "Conflict" and "Non-Conflict" I had to make some random stabs before I found what I wanted. I was looking for an instance where a potential flame war had been averted by civility, and I think I got lucky. The thread I stumbled on was entitled "NOT!!!! joining the group" and reading through it made me proud to be associated with ASHM. The thread runs to 34 posts. It is dated November 1998. A lot of the contributors are no longer posting with us, but they have been replaced in kind. I have included all 34 posts (below). Most of you won’t want to labor through the whole thing, but here it is for reading in detail, or for sampling, whichever you like.  After reading it, my own conclusion was, and is, that we are a civilized, superb group of extraordinarily intelligent, appreciative, compassionate, and concerned people (did I miss  "perceptive"?), and why someone has not long since organized a parade in our honor is beyond me. I can hear _Stars and Stripes Forever_ and _76 Trombones_ even as I write. I realize that such self-congratulatory praise as this risks drawing in a night crawler or two from the outside. If that happens you have my sincere apology, but it wouldn’t change a thing with such a civilized group as US!. I have left the dialog untouched. Where I felt a need to comment, I have included same in brackets. BobB MESSAGE 1 in thread I have been lurking here for more than a month. I thought this was somewhere I could find support for conditions I will not describe.  I have suffered for most of my life alone, I can continue to do so.  I have enough trouble with neighbors and family that I will not expose myself to a bunch of flaming strangers. [By "a bunch of flaming strangers" twxtt meant us. I do not know what occasioned her resentment. From what I have observed OUTSIDE  ASHM however, such a post would most likely have signaled the start of a free-for-all. --- bb] MESSAGE 2 in thread I have been lurking here for more than a month. I thought this was somewhere I could find support for conditions I will not describe.  I have suffered for most of my life alone, I can continue to do so.  I have enough trouble with neighbors and family that I will not expose myself to a bunch of flaming strangers. Very sensible decision not to expose yourself to a bunch of flaming strangers! But many of us wouldn’t be strangers if you got to know us ; ). You can still find support for headaches, and will most certainly learn a great deal about medication treatments and options if you continue to read our ng. I wish you well Anne "You must see the infinite, i.e., the universal,  in your particular, or it is only gossip."–O.W.Holmes, Jr. MESSAGE 3 in thread I have been lurking here for more than a month. I thought this was somewhere I could find support for conditions I will not describe. Can only assume then that they are related to headache somehow or another.  One of the great things about ASHM is our ability to not only find support, but give it to others as well. I have suffered for most of my life alone, I can continue to do so.  I have enough trouble with neighbors and family that I will not expose myself to a bunch of flaming strangers. Actually, I hadn’t noticed a "bunch" of flaming strangers here…a couple of people having a dispute,  yes. It’s a shame that after more than a month of lurking here you weren’t able to see beyond the current circumstances to notice all of the sharing, caring, concern and occasional humor that abounds here as well.  Since you’ve suffered like so many of us, you probably could have gotten and given much here. I hope you will reconsider.  Wishing you many pain- free days ahead. Judy "Close your eyes and surrender to your darkest dreams! Purge your thoughts of the life you knew before! Close your eyes, let your spirit start to soar! And you’ll live as you’ve never lived before . . ." MESSAGE 4 in thread Please just take a deep breath .. Shake your head but stay with us.  If you think that the ng is a little off center now wait until after Christmas when I find out someone got a bigger and better present than I did…  :) Good Luck… RonMum Queen Of Hugs Don"t Be Reckless With Other Peoples Hearts… Don’t Put Up With People Who Are Reckless With YOURS MESSAGE 5 in thread Actually, I hadn’t noticed a "bunch" of flaming strangers here…a couple of people having a dispute,  yes. It’s a shame that after more than a month of lurking here you weren’t able to see beyond the current circumstances to notice all of the sharing, caring, oncern and occasional humor that abounds here as well.  Since you’ve suffered like so many of us, you probably could have gotten and given much here. I hope you will reconsider.  Wishing you many pain- free days ahead. Judy Very well said Toty MESSAGE 6 in thread In all honesty, I have to ask:  "So what’s your point?" Because really, there are a lot of us here who love coming together and talking, sharing supporting, laughing and occasionally, there is a Flame war. But do ya know what? there’s this neat option in newsgroups that allows you to filter out unwanted posts…such as flame wars. So if our humble group isn’t good enough for you, then by all means, please don’t join us. How many people lurk and then decide against joining? They don’t care to post such things. In my humble opinion, it’s the likes of you that would start a flame war and make us all sick. Have a HAPPY DAY.   :0) Pooh (with a scarcastic smile on her face, but really doesn’t care) They told me I was crazy.  I looked the clowns right in the eye and laughed. MESSAGE 7 in thread ALRIGHT, I will keep my feelings to myself and just go back to lurking. I have been in severe pain and my mood is not one that should ever be on line with any group.  And I guess Pooh has the same nasty attitude right now.  Sorry about that all, just don’t pay attention to me any longer, just like she said. MESSAGE 8 in thread ALRIGHT, I will keep my feelings to myself and just go back to lurking. I have been in severe pain and my mood is not one that should ever be on line with any group.  And I guess Pooh has the same nasty attitude right now.  Sorry about that all, just don’t pay attention to me any longer, just like she said. Again, why not dwell on all the positive posts here asking you to stay?  If you go looking for negatives, you will certainly find them.  Why not reconsider and introduce yourself…there’s plenty of us who would like to get to know you :) Judy "Close your eyes and surrender to your darkest dreams! Purge your thoughts of the life you knew before! Close your eyes, let your spirit start to soar! And you’ll live as you’ve never lived before . . ." MESSAGE 9 in thread

… read more »

Response:

Thanks Bob !!  I forgot the sig. line about the sock puppet and I am laughing again as I did then…  I resemble that remark  LOL  ~~memories~~  great group then and still a great group…  Ppl come and ppl go and I have fond memories of all.. RonMum

– Hide quoted text — Show quoted text – ASHM Forever! I got to thinking the other day that things really have been peaceful around ASHM for quite a while now. I hope it isn’t bad luck to say this.  I have had only one brief experience with a news group other than ASHM. The one I did visit (over a year ago) was called ASC-P (I believe that’s the right designation). I made less than a dozen posts there before I found out that it was a place — at least then — where the pain suffered by the subscribers was nearly matched by the pain they inflicted on one another. Perhaps it’s not still that way — I hope not. I may have come and gone at a bad time, but I promise you that I don’t want to go back to find out. Although conflict never was much of a problem with us, there have been a few isolated moments. With this in mind, I decided this morning to look at some old ASHM threads to see how well, or how poorly, we have handled unrest within OUR group in the past. Most of our posts are available on Google’s archives at <http://groups.google.com and, since the various threads can’t be sorted between "Conflict" and "Non-Conflict" I had to make some random stabs before I found what I wanted. I was looking for an instance where a potential flame war had been averted by civility, and I think I got lucky. The thread I stumbled on was entitled "NOT!!!! joining the group" and reading through it made me proud to be associated with ASHM. The thread runs to 34 posts. It is dated November 1998. A lot of the contributors are no longer posting with us, but they have been replaced in kind. I have included all 34 posts (below). Most of you won’t want to labor through the whole thing, but here it is for reading in detail, or for sampling, whichever you like.  After reading it, my own conclusion was, and is, that we are a civilized, superb group of extraordinarily intelligent, appreciative, compassionate, and concerned people (did I miss  "perceptive"?), and why someone has not long since organized a parade in our honor is beyond me. I can hear _Stars and Stripes Forever_ and _76 Trombones_ even as I write. I realize that such self-congratulatory praise as this risks drawing in a night crawler or two from the outside. If that happens you have my sincere apology, but it wouldn’t change a thing with such a civilized group as US!. I have left the dialog untouched. Where I felt a need to comment, I have included same in brackets. BobB MESSAGE 1 in thread I have been lurking here for more than a month. I thought this was somewhere I could find support for conditions I will not describe.  I have suffered for most of my life alone, I can continue to do so.  I have enough trouble with neighbors and family that I will not expose myself to a bunch of flaming strangers. [By "a bunch of flaming strangers" twxtt meant us. I do not know what occasioned her resentment. From what I have observed OUTSIDE  ASHM however, such a post would most likely have signaled the start of a free-for-all. --- bb] MESSAGE 2 in thread I have been lurking here for more than a month. I thought this was somewhere I could find support for conditions I will not describe.  I have suffered for most of my life alone, I can continue to do so.  I have enough trouble with neighbors and family that I will not expose myself to a bunch of flaming strangers. Very sensible decision not to expose yourself to a bunch of flaming strangers! But many of us wouldn’t be strangers if you got to know us ; ). You can still find support for headaches, and will most certainly learn a great deal about medication treatments and options if you continue to read our ng. I wish you well Anne "You must see the infinite, i.e., the universal,  in your particular, or it is only gossip."–O.W.Holmes, Jr. MESSAGE 3 in thread I have been lurking here for more than a month. I thought this was somewhere I could find support for conditions I will not describe. Can only assume then that they are related to headache somehow or another.  One of the great things about ASHM is our ability to not only find support, but give it to others as well. I have suffered for most of my life alone, I can continue to do so.  I have enough trouble with neighbors and family that I will not expose myself to a bunch of flaming strangers. Actually, I hadn’t noticed a "bunch" of flaming strangers here…a couple of people having a dispute,  yes. It’s a shame that after more than a month of lurking here you weren’t able to see beyond the current circumstances to notice all of the sharing, caring, concern and occasional humor that abounds here as well.  Since you’ve suffered like so many of us, you probably could have gotten and given much here. I hope you will reconsider.  Wishing you many pain- free days ahead. Judy "Close your eyes and surrender to your darkest dreams! Purge your thoughts of the life you knew before! Close your eyes, let your spirit start to soar! And you’ll live as you’ve never lived before . . ." MESSAGE 4 in thread Please just take a deep breath .. Shake your head but stay with us.  If you think that the ng is a little off center now wait until after Christmas when I find out someone got a bigger and better present than I did…  :) Good Luck… RonMum Queen Of Hugs Don"t Be Reckless With Other Peoples Hearts… Don’t Put Up With People Who Are Reckless With YOURS MESSAGE 5 in thread Actually, I hadn’t noticed a "bunch" of flaming strangers here…a couple of people having a dispute,  yes. It’s a shame that after more than a month of lurking here you weren’t able to see beyond the current circumstances to notice all of the sharing, caring, oncern and occasional humor that abounds here as well.  Since you’ve suffered like so many of us, you probably could have gotten and given much here. I hope you will reconsider.  Wishing you many pain- free days ahead. Judy Very well said Toty MESSAGE 6 in thread In all honesty, I have to ask:  "So what’s your point?" Because really, there are a lot of us here who love coming together and talking, sharing supporting, laughing and occasionally, there is a Flame war. But do ya know what? there’s this neat option in newsgroups that allows you to filter out unwanted posts…such as flame wars. So if our humble group isn’t good enough for you, then by all means, please don’t join us. How many people lurk and then decide against joining? They don’t care to post such things. In my humble opinion, it’s the likes of you that would start a flame war and make us all sick. Have a HAPPY DAY.   :0) Pooh (with a scarcastic smile on her face, but really doesn’t care) They told me I was crazy.  I looked the clowns right in the eye and laughed. MESSAGE 7 in thread ALRIGHT, I will keep my feelings to myself and just go back to lurking. I have been in severe pain and my mood is not one that should ever be on line with any group.  And I guess Pooh has the same nasty attitude right now.  Sorry about that all, just don’t pay attention to me any longer, just like she said. MESSAGE 8 in thread ALRIGHT, I will keep my feelings to myself and just go back to lurking. I have been in severe pain and my mood is not one that should ever be on line with any group.  And I guess Pooh has the same nasty attitude right now.  Sorry about that all, just don’t pay attention to me any longer, just like she said. Again, why not dwell on all the positive posts here asking you to stay?  If you go looking for negatives, you will certainly find them.  Why not reconsider and introduce yourself…there’s plenty of us who would like to get to know you :) Judy "Close your eyes and surrender to your darkest dreams! Purge your thoughts of the life you knew before! Close your eyes, let your spirit start to soar! And you’ll live as you’ve never lived before . . ." MESSAGE 9 in thread Again, why not dwell on all the positive posts here asking you to stay?  If you go looking for negatives, you will certainly find them.  Why not reconsider and introduce yourself…there’s plenty of us who would like to get to know you :) She’s right, there are plenty of us here to offer you support.  We all understand pain.  Look for the positive. It’s what we all have to do to get through life.  Let us get to know you. Amy MESSAGE 10 in thread

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Response:

and you still are the Queen of Hugs, RonMum – though I think I remember you and Auntie Helen fighting for that title at one point! Many hugs Jane in AZ *Courage is the power to let go of the familiar*

– Hide quoted text — Show quoted text – Thanks Bob !!  I forgot the sig. line about the sock puppet and I am laughing again as I did then…  I resemble that remark  LOL  ~~memories~~  great group then and still a great group…  Ppl come and ppl go and I have fond memories of all.. RonMum ASHM Forever! I got to thinking the other day that things really have been peaceful around ASHM for quite a while now. I hope it isn’t bad luck to say this.  I have had only one brief experience with a news group other than ASHM. The one I did visit (over a year ago) was called ASC-P (I believe that’s the right designation). I made less than a dozen posts there before I found out that it was a place — at least then — where the pain suffered by the subscribers was nearly matched by the pain they inflicted on one another. Perhaps it’s not still that way — I hope not. I may have come and gone at a bad time, but I promise you that I don’t want to go back to find out. Although conflict never was much of a problem with us, there have been a few isolated moments. With this in mind, I decided this morning to look at some old ASHM threads to see how well, or how poorly, we have handled unrest within OUR group in the past. Most of our posts are available on Google’s archives at <http://groups.google.com and, since the various threads can’t be sorted between "Conflict" and "Non-Conflict" I had to make some random stabs before I found what I wanted. I was looking for an instance where a potential flame war had been averted by civility, and I think I got lucky. The thread I stumbled on was entitled "NOT!!!! joining the group" and reading through it made me proud to be associated with ASHM. The thread runs to 34 posts. It is dated November 1998. A lot of the contributors are no longer posting with us, but they have been replaced in kind. I have included all 34 posts (below). Most of you won’t want to labor through the whole thing, but here it is for reading in detail, or for sampling, whichever you like.  After reading it, my own conclusion was, and is, that we are a civilized, superb group of extraordinarily intelligent, appreciative, compassionate, and concerned people (did I miss  "perceptive"?), and why someone has not long since organized a parade in our honor is beyond me. I can hear _Stars and Stripes Forever_ and _76 Trombones_ even as I write. I realize that such self-congratulatory praise as this risks drawing in a night crawler or two from the outside. If that happens you have my sincere apology, but it wouldn’t change a thing with such a civilized group as US!. I have left the dialog untouched. Where I felt a need to comment, I have included same in brackets. BobB MESSAGE 1 in thread I have been lurking here for more than a month. I thought this was somewhere I could find support for conditions I will not describe.  I have suffered for most of my life alone, I can continue to do so.  I have enough trouble with neighbors and family that I will not expose myself to a bunch of flaming strangers. [By "a bunch of flaming strangers" twxtt meant us. I do not know what occasioned her resentment. From what I have observed OUTSIDE  ASHM however, such a post would most likely have signaled the start of a free-for-all. --- bb] MESSAGE 2 in thread I have been lurking here for more than a month. I thought this was somewhere I could find support for conditions I will not describe.  I have suffered for most of my life alone, I can continue to do so.  I have enough trouble with neighbors and family that I will not expose myself to a bunch of flaming strangers. Very sensible decision not to expose yourself to a bunch of flaming strangers! But many of us wouldn’t be strangers if you got to know us ; ). You can still find support for headaches, and will most certainly learn a great deal about medication treatments and options if you continue to read our ng. I wish you well Anne "You must see the infinite, i.e., the universal,  in your particular, or it is only gossip."–O.W.Holmes, Jr. MESSAGE 3 in thread I have been lurking here for more than a month. I thought this was somewhere I could find support for conditions I will not describe. Can only assume then that they are related to headache somehow or another.  One of the great things about ASHM is our ability to not only find support, but give it to others as well. I have suffered for most of my life alone, I can continue to do so.  I have enough trouble with neighbors and family that I will not expose myself to a bunch of flaming strangers. Actually, I hadn’t noticed a "bunch" of flaming strangers here…a couple of people having a dispute,  yes. It’s a shame that after more than a month of lurking here you weren’t able to see beyond the current circumstances to notice all of the sharing, caring, concern and occasional humor that abounds here as well.  Since you’ve suffered like so many of us, you probably could have gotten and given much here. I hope you will reconsider.  Wishing you many pain- free days ahead. Judy "Close your eyes and surrender to your darkest dreams! Purge your thoughts of the life you knew before! Close your eyes, let your spirit start to soar! And you’ll live as you’ve never lived before . . ." MESSAGE 4 in thread Please just take a deep breath .. Shake your head but stay with us.  If you think that the ng is a little off center now wait until after Christmas when I find out someone got a bigger and better present than I did…  :) Good Luck… RonMum Queen Of Hugs Don"t Be Reckless With Other Peoples Hearts… Don’t Put Up With People Who Are Reckless With YOURS MESSAGE 5 in thread Actually, I hadn’t noticed a "bunch" of flaming strangers here…a couple of people having a dispute,  yes. It’s a shame that after more than a month of lurking here you weren’t able to see beyond the current circumstances to notice all of the sharing, caring, oncern and occasional humor that abounds here as well.  Since you’ve suffered like so many of us, you probably could have gotten and given much here. I hope you will reconsider.  Wishing you many pain- free days ahead. Judy Very well said Toty MESSAGE 6 in thread In all honesty, I have to ask:  "So what’s your point?" Because really, there are a lot of us here who love coming together and talking, sharing supporting, laughing and occasionally, there is a Flame war. But do ya know what? there’s this neat option in newsgroups that allows you to filter out unwanted posts…such as flame wars. So if our humble group isn’t good enough for you, then by all means, please don’t join us. How many people lurk and then decide against joining? They don’t care to post such things. In my humble opinion, it’s the likes of you that would start a flame war and make us all sick. Have a HAPPY DAY.   :0) Pooh (with a scarcastic smile on her face, but really doesn’t care) They told me I was crazy.  I looked the clowns right in the eye and laughed. MESSAGE 7 in thread ALRIGHT, I will keep my feelings to myself and just go back to lurking. I have been in severe pain and my mood is not one that should ever be on line with any group.  And I guess Pooh has the same nasty attitude right now.  Sorry about that all, just don’t pay attention to me any longer, just like she said. MESSAGE 8 in thread ALRIGHT, I will keep my feelings to myself and just go back to lurking. I have been in severe pain and my mood is not one that should ever be on line with any group.  And I guess Pooh has the same nasty attitude right now.  Sorry about that all, just don’t pay attention to me any longer, just like she said. Again, why not dwell on all the positive posts here asking you to stay?  If you go looking for negatives, you will certainly find them.  Why not reconsider and introduce yourself…there’s plenty of us who would

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I heard from Mary C. but that was years ago.   Oh and Bob I heard from Roxie about a month ago and she was on her way to Vegas… Expect more charges VBG Did anyone ever get Diane off the boat to India?  Couple of years hearing from Jane H. also.  She was doing pretty good at that time.  Dont pick up one of the cluster groups anymore so havent seen Mario  (are you out there?) in some time either. Ronnie

– Hide quoted text — Show quoted text – Did anyone ever track down Mary C? Which Mary was she? Is she the Mary who was the wonderful cook with fantastic recipes for cheesecake etc. That Mary had the husband with clusters who had the big oxygen tank. Oops, no, I think she was Mary F. She was the one with the sig line "No Kitty!  it’s MY POT PIE!". I haven’t seen Mary C. post in years. Mary F. did pop back in more recently. Kadee

Response:

So they finally caught up with you for not paying the credit card bill that some of us had a wonderful time on *-) Ronnie

Yes, I contested the portion of the bill that said you and Diane had spent $1000.00 at some site called the Rooster Raunch, thinking it must have been some kind of Dude *ranch* but was informed that the "raunch" part was correct. They had your photo on file. Roxi confirmed it all but I refused to pay, hence, here I be. Did anyone ever track down Mary C? bobW

Response:

So they finally caught up with you for not paying the credit card bill that some of us had a wonderful time on *-) Ronnie

– Hide quoted text — Show quoted text – What? Was I sick that day or on KP??? LOL That was quite a group of people back then. (not that the current group isn’t) I’m glad we were able to rehab most of them and help them re-enter society and go on to lead happy normal lives. I want to know who gave the bad reference to the parole board about me. Last I heard they were enforcing my life sentence. Just ain’t fair I tell ya!! BobW thanks BobB ASHM Forever!

Response:

- Hide quoted text — Show quoted text – Bob, This was a wonderful tribute to ASHM! It brought to mind a list from way back around that time period…I joined ASHM at some point in ‘98 until some point in ‘99. I kept this list on the back of one of those clear pocket notebook binders. It happens to be kept right next to my desk (was an integral part of my nursing – held patient info). Anyway, the list was entitled "Headache Phrases that Irritate Us the Most". It looks like it was compiled by jqt. If anyone wants me to repost it, let me know… By all means, Dawn, please do. I, for one, would like to hear from John Q. Taylor again, even second hand. BobB

Posted as a new thread!! ~Dawn – Hide quoted text — Show quoted text – —–= Posted via Newsfeeds.Com, Uncensored Usenet News =—– http://www.newsfeeds.com – The #1 Newsgroup Service in the World! —–==  Over 100,000 Newsgroups – 19 Different Servers! =—–

Response:

please repost JQT’s list, Dawn – that would be terrific! I remember jqt! Hugs Jane in AZ *Courage is the power to let go of the familiar* Bob, This was a wonderful tribute to ASHM! It brought to mind a list from way back around that time period…I joined ASHM at some point in ‘98 until some point in ‘99. I kept this list on the back of one of those clear pocket notebook binders. It happens to be kept right next to my desk (was an integral part of my nursing – held patient info). Anyway, the list was entitled "Headache Phrases that Irritate Us the Most". It looks like it was compiled by jqt. If anyone wants me to repost it, let me know… ~Dawn

– Hide quoted text — Show quoted text – how eloquent as always Bob!  I remember other such discussions where this group was able to pull together despite adversity, convincing others and ourselves that we truly are a wonderful group of people.  ASHM is the first newsgroup I ever tried, back when I was having migs every single day and was locked in my apartment by the pain and ASHM was all there was.  There was a Magic Bus going on then, and they let me hitch a ride, never questioning my newsgroup ignorance.  I never got so many cyber hugs, and have been here ever since, though sometimes only in the background! Thanks everyone – and you too Bob for reminding us of our unity and love. Jane in AZ *Courage is the power to let go of the familiar* ASHM Forever! I got to thinking the other day that things really have been peaceful  around ASHM for quite a while now. I hope it isn’t bad luck to say this.  I have  had only one brief experience with a news group other than ASHM. The one I did  visit (over a year ago) was called ASC-P (I believe that’s the right  designation). I made less than a dozen posts there before I found out that it was a  place — at least then — where the pain suffered by the subscribers was nearly  matched by the pain they inflicted on one another. Perhaps it’s not still that  way — I hope not. I may have come and gone at a bad time, but I promise you that I  don’t want to go back to find out. Although conflict never was much of a problem with us, there have been a  few isolated moments. With this in mind, I decided this morning to look at  some old ASHM threads to see how well, or how poorly, we have handled unrest within  OUR group in the past. Most of our posts are available on Google’s archives at <http://groups.google.com and, since the various threads can’t be sorted between "Conflict" and "Non-Conflict" I had to make some random stabs  before I found what I wanted. I was looking for an instance where a potential flame  war had been averted by civility, and I think I got lucky. The thread I  stumbled on was entitled "NOT!!!! joining the group" and reading through it made me  proud to be associated with ASHM. The thread runs to 34 posts. It is dated November 1998. A lot of the contributors are no longer posting with us, but they have been replaced in  kind. I have included all 34 posts (below). Most of you won’t want to labor  through the whole thing, but here it is for reading in detail, or for sampling, whichever you like.  After reading it, my own conclusion was, and is, that  we are a civilized, superb group of extraordinarily intelligent,  appreciative, compassionate, and concerned people (did I miss  "perceptive"?), and why  someone has not long since organized a parade in our honor is beyond me. I can  hear _Stars and Stripes Forever_ and _76 Trombones_ even as I write. I realize  that such self-congratulatory praise as this risks drawing in a night crawler  or two from the outside. If that happens you have my sincere apology, but it  wouldn’t change a thing with such a civilized group as US!. I have left the dialog untouched. Where I felt a need to comment, I have included same in brackets. BobB MESSAGE 1 in thread I have been lurking here for more than a month. I thought this was somewhere I could find support for conditions I will not describe.  I have suffered for most of my life alone, I can continue to do so.  I have enough trouble with neighbors and family that I will not expose myself to a bunch of flaming strangers. [By "a bunch of flaming strangers" twxtt meant us. I do not know what  occasioned her resentment. From what I have observed OUTSIDE  ASHM however, such a  post would most likely have signaled the start of a free-for-all. --- bb] MESSAGE 2 in thread I have been lurking here for more than a month. I thought this was somewhere I could find support for conditions I will not describe.  I have suffered for most of my life alone, I can continue to do so.  I have enough trouble with neighbors and family that I will not expose myself to a bunch of flaming strangers. Very sensible decision not to expose yourself to a bunch of flaming  strangers! But many of us wouldn’t be strangers if you got to know us ; ). You can still find support for headaches, and will most certainly learn a great  deal about medication treatments and options if you continue to read our ng. I wish you well Anne "You must see the infinite, i.e., the universal,  in your particular, or  it is only gossip."–O.W.Holmes, Jr. MESSAGE 3 in thread I have been lurking here for more than a month. I thought this was somewhere I could find support for conditions I will not describe. Can only assume then that they are related to headache somehow or another.  One of the great things about ASHM is our ability to not only find support, but give it to others as well. I have suffered for most of my life alone, I can continue to do so. I have enough trouble with neighbors and family that I will not expose myself to a bunch of flaming strangers. Actually, I hadn’t noticed a "bunch" of flaming strangers here…a couple of people having a dispute,  yes. It’s a shame that after more than a month of lurking here you weren’t able to see beyond the current circumstances to notice all of the sharing, caring, concern and occasional humor that abounds here as well.  Since you’ve suffered like so many of us, you probably could have gotten and given much here. I hope you will reconsider.  Wishing you many pain- free days ahead. Judy "Close your eyes and surrender to your darkest dreams! Purge your thoughts of the life you knew before! Close your eyes, let your spirit start to soar! And you’ll live as you’ve never lived before . . ." MESSAGE 4 in thread Please just take a deep breath .. Shake your head but stay with us.  If you think that the ng is a little off center now wait until after Christmas when I find out someone got a bigger and better present than I did…  :) Good Luck… RonMum Queen Of Hugs Don"t Be Reckless With Other Peoples Hearts… Don’t Put Up With People Who Are Reckless With YOURS MESSAGE 5 in thread Actually, I hadn’t noticed a "bunch" of flaming strangers here…a couple of people having a dispute,  yes. It’s a shame that after more than a month of lurking here you weren’t able to see beyond the current circumstances to notice all of the sharing, caring, oncern and occasional humor that abounds here as well.  Since you’ve suffered like so many of us, you probably could have gotten and given much here. I hope you will reconsider.  Wishing you many pain- free days ahead. Judy Very well said Toty MESSAGE 6 in thread In all honesty, I have to ask:  "So what’s your point?" Because really, there are a lot of us here who love coming together and talking, sharing supporting, laughing and occasionally, there is a Flame war. But do ya know what? there’s this neat option in newsgroups that allows you to filter out unwanted posts…such as flame wars. So if our humble group isn’t good enough for you, then by all means, please don’t join us.

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Response:

Bob, This was a wonderful tribute to ASHM! It brought to mind a list from way back around that time period…I joined ASHM at some point in ‘98 until some point in ‘99. I kept this list on the back of one of those clear pocket notebook binders. It happens to be kept right next to my desk (was an integral part of my nursing – held patient info). Anyway, the list was entitled "Headache Phrases that Irritate Us the Most". It looks like it was compiled by jqt. If anyone wants me to repost it, let me know…

By all means, Dawn, please do. I, for one, would like to hear from John Q. Taylor again, even second hand. BobB —–= Posted via Newsfeeds.Com, Uncensored Usenet News =—– http://www.newsfeeds.com – The #1 Newsgroup Service in the World! —–==  Over 100,000 Newsgroups – 19 Different Servers! =—–

Response:

So how is the ‘Wold of Rohan’ doing these days? Dan

– Hide quoted text — Show quoted text – So they finally caught up with you for not paying the credit card bill that some of us had a wonderful time on *-) Ronnie Yes, I contested the portion of the bill that said you and Diane had spent $1000.00 at some site called the Rooster Raunch, thinking it must have been some kind of Dude *ranch* but was informed that the "raunch" part was correct. They had your photo on file. Roxi confirmed it all but I refused to pay, hence, here I be. Did anyone ever track down Mary C? bobW

Response:

Indeed…please do. Dan

– Hide quoted text — Show quoted text – please repost JQT’s list, Dawn – that would be terrific! I remember jqt! Hugs Jane in AZ *Courage is the power to let go of the familiar* Bob, This was a wonderful tribute to ASHM! It brought to mind a list from way back around that time period…I joined ASHM at some point in ‘98 until some point in ‘99. I kept this list on the back of one of those clear pocket notebook binders. It happens to be kept right next to my desk (was an integral part of my nursing – held patient info). Anyway, the list was entitled "Headache Phrases that Irritate Us the Most". It looks like it was compiled by jqt. If anyone wants me to repost it, let me know… ~Dawn how eloquent as always Bob!  I remember other such discussions where this group was able to pull together despite adversity, convincing others and ourselves that we truly are a wonderful group of people.  ASHM is the first newsgroup I ever tried, back when I was having migs every single day and was locked in my apartment by the pain and ASHM was all there was.  There was a Magic Bus going on then, and they let me hitch a ride, never questioning my newsgroup ignorance.  I never got so many cyber hugs, and have been here ever since, though sometimes only in the background! Thanks everyone – and you too Bob for reminding us of our unity and love. Jane in AZ *Courage is the power to let go of the familiar* ASHM Forever! I got to thinking the other day that things really have been peaceful  around ASHM for quite a while now. I hope it isn’t bad luck to say this.  I have  had only one brief experience with a news group other than ASHM. The one I did  visit (over a year ago) was called ASC-P (I believe that’s the right  designation). I made less than a dozen posts there before I found out that it was a  place — at least then — where the pain suffered by the subscribers was nearly  matched by the pain they inflicted on one another. Perhaps it’s not still that  way — I hope not. I may have come and gone at a bad time, but I promise you that I  don’t want to go back to find out. Although conflict never was much of a problem with us, there have been a  few isolated moments. With this in mind, I decided this morning to look at  some old ASHM threads to see how well, or how poorly, we have handled unrest within  OUR group in the past. Most of our posts are available on Google’s archives at <http://groups.google.com and, since the various threads can’t be sorted between "Conflict" and "Non-Conflict" I had to make some random stabs  before I found what I wanted. I was looking for an instance where a potential flame  war had been averted by civility, and I think I got lucky. The thread I  stumbled on was entitled "NOT!!!! joining the group" and reading through it made me  proud to be associated with ASHM. The thread runs to 34 posts. It is dated November 1998. A lot of the contributors are no longer posting with us, but they have been replaced in  kind. I have included all 34 posts (below). Most of you won’t want to labor  through the whole thing, but here it is for reading in detail, or for sampling, whichever you like.  After reading it, my own conclusion was, and is, that  we are a civilized, superb group of extraordinarily intelligent,  appreciative, compassionate, and concerned people (did I miss  "perceptive"?), and why  someone has not long since organized a parade in our honor is beyond me. I can  hear _Stars and Stripes Forever_ and _76 Trombones_ even as I write. I realize  that such self-congratulatory praise as this risks drawing in a night crawler  or two from the outside. If that happens you have my sincere apology, but it  wouldn’t change a thing with such a civilized group as US!. I have left the dialog untouched. Where I felt a need to comment, I have included same in brackets. BobB MESSAGE 1 in thread I have been lurking here for more than a month. I thought this was somewhere I could find support for conditions I will not describe. I have suffered for most of my life alone, I can continue to do so.  I have enough trouble with neighbors and family that I will not expose myself to a bunch of flaming strangers. [By "a bunch of flaming strangers" twxtt meant us. I do not know what  occasioned her resentment. From what I have observed OUTSIDE  ASHM however, such a  post would most likely have signaled the start of a free-for-all. --- bb] MESSAGE 2 in thread I have been lurking here for more than a month. I thought this was somewhere I could find support for conditions I will not describe. I have suffered for most of my life alone, I can continue to do so. I have enough trouble with neighbors and family that I will not expose myself to a bunch of flaming strangers. Very sensible decision not to expose yourself to a bunch of flaming  strangers! But many of us wouldn’t be strangers if you got to know us ; ). You can still find support for headaches, and will most certainly learn a great  deal about medication treatments and options if you continue to read our ng. I wish you well Anne "You must see the infinite, i.e., the universal,  in your particular, or  it is only gossip."–O.W.Holmes, Jr. MESSAGE 3 in thread I have been lurking here for more than a month. I thought this was somewhere I could find support for conditions I will not describe. Can only assume then that they are related to headache somehow or another.  One of the great things about ASHM is our ability to not only find support, but give it to others as well. I have suffered for most of my life alone, I can continue to do so. I have enough trouble with neighbors and family that I will not expose myself to a bunch of flaming strangers. Actually, I hadn’t noticed a "bunch" of flaming strangers here…a couple of people having a dispute,  yes. It’s a shame that after more than a month of lurking here you weren’t able to see beyond the current circumstances to notice all of the sharing, caring, concern and occasional humor that abounds here as well.  Since you’ve suffered like so many of us, you probably could have gotten and given much here. I hope you will reconsider.  Wishing you many pain- free days ahead. Judy "Close your eyes and surrender to your darkest dreams! Purge your thoughts of the life you knew before! Close your eyes, let your spirit start to soar! And you’ll live as you’ve never lived before . . ." MESSAGE 4 in thread Please just take a deep breath .. Shake your head but stay with us.  If you think that the ng is a little off center now wait until after Christmas when I find out someone got a bigger and better present than I did…  :) Good Luck… RonMum Queen Of Hugs Don"t Be Reckless With Other Peoples Hearts… Don’t Put Up With People Who Are Reckless With YOURS MESSAGE 5 in thread Actually, I hadn’t noticed a "bunch" of flaming strangers here…a couple of people having a dispute,  yes. It’s a shame that after more than a month of lurking here you weren’t able to see beyond the current circumstances to notice all of the sharing, caring, oncern and occasional humor that abounds here as well.  Since you’ve suffered like so many of us, you probably could have gotten and given much here. I hope you will reconsider.  Wishing you many pain- free days ahead. Judy Very well said Toty MESSAGE 6 in thread

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Response:

Bob, This was a wonderful tribute to ASHM! It brought to mind a list from way back around that time period…I joined ASHM at some point in ‘98 until some point in ‘99. I kept this list on the back of one of those clear pocket notebook binders. It happens to be kept right next to my desk (was an integral part of my nursing – held patient info). Anyway, the list was entitled "Headache Phrases that Irritate Us the Most". It looks like it was compiled by jqt. If anyone wants me to repost it, let me know… ~Dawn – Hide quoted text — Show quoted text – how eloquent as always Bob!  I remember other such discussions where this group was able to pull together despite adversity, convincing others and ourselves that we truly are a wonderful group of people.  ASHM is the first newsgroup I ever tried, back when I was having migs every single day and was locked in my apartment by the pain and ASHM was all there was.  There was a Magic Bus going on then, and they let me hitch a ride, never questioning my newsgroup ignorance.  I never got so many cyber hugs, and have been here ever since, though sometimes only in the background! Thanks everyone – and you too Bob for reminding us of our unity and love. Jane in AZ *Courage is the power to let go of the familiar* ASHM Forever! I got to thinking the other day that things really have been peaceful  around ASHM for quite a while now. I hope it isn’t bad luck to say this.  I have  had only one brief experience with a news group other than ASHM. The one I did  visit (over a year ago) was called ASC-P (I believe that’s the right  designation). I made less than a dozen posts there before I found out that it was a  place — at least then — where the pain suffered by the subscribers was nearly  matched by the pain they inflicted on one another. Perhaps it’s not still that  way — I hope not. I may have come and gone at a bad time, but I promise you that I  don’t want to go back to find out. Although conflict never was much of a problem with us, there have been a  few isolated moments. With this in mind, I decided this morning to look at  some old ASHM threads to see how well, or how poorly, we have handled unrest within  OUR group in the past. Most of our posts are available on Google’s archives at <http://groups.google.com and, since the various threads can’t be sorted between "Conflict" and "Non-Conflict" I had to make some random stabs  before I found what I wanted. I was looking for an instance where a potential flame  war had been averted by civility, and I think I got lucky. The thread I  stumbled on was entitled "NOT!!!! joining the group" and reading through it made me  proud to be associated with ASHM. The thread runs to 34 posts. It is dated November 1998. A lot of the contributors are no longer posting with us, but they have been replaced in  kind. I have included all 34 posts (below). Most of you won’t want to labor  through the whole thing, but here it is for reading in detail, or for sampling, whichever you like.  After reading it, my own conclusion was, and is, that  we are a civilized, superb group of extraordinarily intelligent,  appreciative, compassionate, and concerned people (did I miss  "perceptive"?), and why  someone has not long since organized a parade in our honor is beyond me. I can  hear _Stars and Stripes Forever_ and _76 Trombones_ even as I write. I realize  that such self-congratulatory praise as this risks drawing in a night crawler  or two from the outside. If that happens you have my sincere apology, but it  wouldn’t change a thing with such a civilized group as US!. I have left the dialog untouched. Where I felt a need to comment, I have included same in brackets. BobB MESSAGE 1 in thread I have been lurking here for more than a month. I thought this was somewhere I could find support for conditions I will not describe.  I have suffered for most of my life alone, I can continue to do so.  I have enough trouble with neighbors and family that I will not expose myself to a bunch of flaming strangers. [By "a bunch of flaming strangers" twxtt meant us. I do not know what  occasioned her resentment. From what I have observed OUTSIDE  ASHM however, such a  post would most likely have signaled the start of a free-for-all. --- bb] MESSAGE 2 in thread I have been lurking here for more than a month. I thought this was somewhere I could find support for conditions I will not describe.  I have suffered for most of my life alone, I can continue to do so.  I have enough trouble with neighbors and family that I will not expose myself to a bunch of flaming strangers. Very sensible decision not to expose yourself to a bunch of flaming  strangers! But many of us wouldn’t be strangers if you got to know us ; ). You can still find support for headaches, and will most certainly learn a great  deal about medication treatments and options if you continue to read our ng. I wish you well Anne "You must see the infinite, i.e., the universal,  in your particular, or  it is only gossip."–O.W.Holmes, Jr. MESSAGE 3 in thread I have been lurking here for more than a month. I thought this was somewhere I could find support for conditions I will not describe. Can only assume then that they are related to headache somehow or another.  One of the great things about ASHM is our ability to not only find support, but give it to others as well. I have suffered for most of my life alone, I can continue to do so.  I have enough trouble with neighbors and family that I will not expose myself to a bunch of flaming strangers. Actually, I hadn’t noticed a "bunch" of flaming strangers here…a couple of people having a dispute,  yes. It’s a shame that after more than a month of lurking here you weren’t able to see beyond the current circumstances to notice all of the sharing, caring, concern and occasional humor that abounds here as well.  Since you’ve suffered like so many of us, you probably could have gotten and given much here. I hope you will reconsider.  Wishing you many pain- free days ahead. Judy "Close your eyes and surrender to your darkest dreams! Purge your thoughts of the life you knew before! Close your eyes, let your spirit start to soar! And you’ll live as you’ve never lived before . . ." MESSAGE 4 in thread Please just take a deep breath .. Shake your head but stay with us.  If you think that the ng is a little off center now wait until after Christmas when I find out someone got a bigger and better present than I did…  :) Good Luck… RonMum Queen Of Hugs Don"t Be Reckless With Other Peoples Hearts… Don’t Put Up With People Who Are Reckless With YOURS MESSAGE 5 in thread Actually, I hadn’t noticed a "bunch" of flaming strangers here…a couple of people having a dispute,  yes. It’s a shame that after more than a month of lurking here you weren’t able to see beyond the current circumstances to notice all of the sharing, caring, oncern and occasional humor that abounds here as well.  Since you’ve suffered like so many of us, you probably could have gotten and given much here. I hope you will reconsider.  Wishing you many pain- free days ahead. Judy Very well said Toty MESSAGE 6 in thread In all honesty, I have to ask:  "So what’s your point?" Because really, there are a lot of us here who love coming together and talking, sharing supporting, laughing and occasionally, there is a Flame war. But do ya know what? there’s this neat option in newsgroups that allows you to filter out unwanted posts…such as flame wars. So if our humble group isn’t good enough for you, then by all means, please don’t join us. How many people lurk and then decide against joining? They don’t care to post such things. In my humble opinion, it’s the likes of you that would start a flame war and make us all sick. Have a HAPPY DAY.   :0) Pooh (with a scarcastic smile on her face, but really doesn’t care) They told me I was crazy.  I looked the clowns right in the eye and laughed. MESSAGE 7 in thread ALRIGHT, I will keep my feelings to myself and just go back to lurking. I have been in severe pain and my mood is not one that should ever be on line with any group.  And I guess Pooh has the same nasty

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Response:

Everyone is great with one exception.. but then he is not an  *everyone* ..      ~~~~Evil grin~~~  I still have to figure out how to keep his beak shut ! Ronnie

– Hide quoted text — Show quoted text – I wasnt on the group back in 98 but I did enjoy reading that thread ASHM forever. Loved the sock puppet and finally got to see the origin of my favorite signature tag . .  Madness takes its toll, please have exact change.  I always loved that one!  Its so comforting to know that no matter how far you roam, you can still come back here for a nice hug. I was around before 98 so recognize the names. I’ve made some great friend here . Kadee

Response:

I heard from Mary C. but that was years ago.   Oh and Bob I heard from Roxie about a month ago and she was on her way to Vegas… Expect more charges VBG Did anyone ever get Diane off the boat to India?  Couple of years hearing from Jane H. also.  She was doing pretty good at that time.  Dont pick up one of the cluster groups anymore so havent seen Mario  (are you out there?) in some time either. Ronnie

I wasnt on the group back in 98 but I did enjoy reading that thread ASHM forever. Loved the sock puppet and finally got to see the origin of my favorite signature tag . .  Madness takes its toll, please have exact change.  I always loved that one!  Its so comforting to know that no matter how far you roam, you can still come back here for a nice hug. Red

Response:

He was labeled the group clown  :-)  Yes Japan Ronnie

– Hide quoted text — Show quoted text – Mario the Italian living in Japan, right?  He was such a sweetie, with a wicked sense of humor! Jane in AZ *Courage is the power to let go of the familiar* I heard from Mary C. but that was years ago.   Oh and Bob I heard from Roxie about a month ago and she was on her way to Vegas… Expect more charges VBG Did anyone ever get Diane off the boat to India?  Couple of years hearing from Jane H. also.  She was doing pretty good at that time.  Dont pick up one of the cluster groups anymore so havent seen Mario  (are you out there?) in some time either. Ronnie Did anyone ever track down Mary C? Which Mary was she? Is she the Mary who was the wonderful cook with fantastic recipes for cheesecake etc. That Mary had the husband with clusters who had the big oxygen tank. Oops, no, I think she was Mary F. She was the one with the sig line "No Kitty!  it’s MY POT PIE!". I haven’t seen Mary C. post in years. Mary F. did pop back in more recently. Kadee

Response:

Mario the Italian living in Japan, right?  He was such a sweetie, with a wicked sense of humor! Jane in AZ *Courage is the power to let go of the familiar*

– Hide quoted text — Show quoted text – I heard from Mary C. but that was years ago.   Oh and Bob I heard from Roxie about a month ago and she was on her way to Vegas… Expect more charges VBG Did anyone ever get Diane off the boat to India?  Couple of years hearing from Jane H. also.  She was doing pretty good at that time.  Dont pick up one of the cluster groups anymore so havent seen Mario  (are you out there?) in some time either. Ronnie Did anyone ever track down Mary C? Which Mary was she? Is she the Mary who was the wonderful cook with fantastic recipes for cheesecake etc. That Mary had the husband with clusters who had the big oxygen tank. Oops, no, I think she was Mary F. She was the one with the sig line "No Kitty!  it’s MY POT PIE!". I haven’t seen Mary C. post in years. Mary F. did pop back in more recently. Kadee

Response:

that WAS fun wasn’t it! I think we got him paroled to drive the Bus, didn’t we? Jane in AZ *Courage is the power to let go of the familiar*

– Hide quoted text — Show quoted text – So they finally caught up with you for not paying the credit card bill that some of us had a wonderful time on *-) Ronnie What? Was I sick that day or on KP??? LOL That was quite a group of people back then. (not that the current group isn’t) I’m glad we were able to rehab most of them and help them re-enter society and go on to lead happy normal lives. I want to know who gave the bad reference to the parole board about me. Last I heard they were enforcing my life sentence. Just ain’t fair I tell ya!! BobW thanks BobB ASHM Forever!

Response:

So how is the ‘Wold of Rohan’ doing these days? Dan

Thanks for asking Dan. My quest of the ring continues. It has been a battle of epic proportions and you should see part 4 in theaters near you in the fall. "Wormtongue’s Revenge" A family of sinister beings from inner earth, known in modern day terms as raccoons recently were caught destroying the wold’s waterfall, tearing away the water supply lines in an attempt to drive the wold’s large, imported koi into dehydration and submission. The tactic worked as the pond in which they lived happily, was drained into the neighboring lowlands. Nearly a dozen of the koi were found drying in the early morning sun. The remaining poor souls were rescued as the floundered about in the rocks, tearing at their scales and the hearts of the children of the wold’s inhabitants. Hope springs eternal in the land as several of the assailants have been tracked down and summarily executed. New residents have been dispatched from the mystical land of Ebay and will be arriving soon upon the wings of the feathered giant UPS. As the savage underworld averted our attention towards the bloodied shores, thieving scoundrels from the city of Edoras made off with the new chariot of the wold’s eldest hobbit, Philunwise. Dark Lord Sauron and his underwriters have decreed that there shall be no renumeration for the great loss and it appears that Philunwise has been sentenced to 4 and 1/2 years of penance, sending in his usual donations each month for a chariot that is no longer in his domain. This shall be his punishment for leaving the universal starting implement in the chariot, whilst he bargained for the short term use of a visual disc in the foreboding land of Blockbuster. We have called upon the aid of Legolas’ legal advisors in an attempt to send the swine of Sauron to meet with the now lost souls of the raccoons for may they all dwell in the fires of the Nazgul and tortured forever by the Witch King of Angmar. Besides that….I’m OK, how about you? ;-) BobW

Response:

I think things are going a bit better on my end than yours.  Just to damn hot to do yard work so I sit here drinking a soda and dinking around on the PC. Beyond that life has been good…busy…but good! Dan

– Hide quoted text — Show quoted text – So how is the ‘Wold of Rohan’ doing these days? Dan Thanks for asking Dan. My quest of the ring continues. It has been a battle of epic proportions and you should see part 4 in theaters near you in the fall. "Wormtongue’s Revenge" A family of sinister beings from inner earth, known in modern day terms as raccoons recently were caught destroying the wold’s waterfall, tearing away the water supply lines in an attempt to drive the wold’s large, imported koi into dehydration and submission. The tactic worked as the pond in which they lived happily, was drained into the neighboring lowlands. Nearly a dozen of the koi were found drying in the early morning sun. The remaining poor souls were rescued as the floundered about in the rocks, tearing at their scales and the hearts of the children of the wold’s inhabitants. Hope springs eternal in the land as several of the assailants have been tracked down and summarily executed. New residents have been dispatched from the mystical land of Ebay and will be arriving soon upon the wings of the feathered giant UPS. As the savage underworld averted our attention towards the bloodied shores, thieving scoundrels from the city of Edoras made off with the new chariot of the wold’s eldest hobbit, Philunwise. Dark Lord Sauron and his underwriters have decreed that there shall be no renumeration for the great loss and it appears that Philunwise has been sentenced to 4 and 1/2 years of penance, sending in his usual donations each month for a chariot that is no longer in his domain. This shall be his punishment for leaving the universal starting implement in the chariot, whilst he bargained for the short term use of a visual disc in the foreboding land of Blockbuster. We have called upon the aid of Legolas’ legal advisors in an attempt to send the swine of Sauron to meet with the now lost souls of the raccoons for may they all dwell in the fires of the Nazgul and tortured forever by the Witch King of Angmar. Besides that….I’m OK, how about you? ;-) BobW

Response:

Mushrooms again? Ronnie

– Hide quoted text — Show quoted text – So how is the ‘Wold of Rohan’ doing these days? Dan Thanks for asking Dan. My quest of the ring continues. It has been a battle of epic proportions and you should see part 4 in theaters near you in the fall. "Wormtongue’s Revenge" A family of sinister beings from inner earth, known in modern day terms as raccoons recently were caught destroying the wold’s waterfall, tearing away the water supply lines in an attempt to drive the wold’s large, imported koi into dehydration and submission. The tactic worked as the pond in which they lived happily, was drained into the neighboring lowlands. Nearly a dozen of the koi were found drying in the early morning sun. The remaining poor souls were rescued as the floundered about in the rocks, tearing at their scales and the hearts of the children of the wold’s inhabitants. Hope springs eternal in the land as several of the assailants have been tracked down and summarily executed. New residents have been dispatched from the mystical land of Ebay and will be arriving soon upon the wings of the feathered giant UPS. As the savage underworld averted our attention towards the bloodied shores, thieving scoundrels from the city of Edoras made off with the new chariot of the wold’s eldest hobbit, Philunwise. Dark Lord Sauron and his underwriters have decreed that there shall be no renumeration for the great loss and it appears that Philunwise has been sentenced to 4 and 1/2 years of penance, sending in his usual donations each month for a chariot that is no longer in his domain. This shall be his punishment for leaving the universal starting implement in the chariot, whilst he bargained for the short term use of a visual disc in the foreboding land of Blockbuster. We have called upon the aid of Legolas’ legal advisors in an attempt to send the swine of Sauron to meet with the now lost souls of the raccoons for may they all dwell in the fires of the Nazgul and tortured forever by the Witch King of Angmar. Besides that….I’m OK, how about you? ;-) BobW

Response:

From me too !!!    John had such a way with words.  If you are peeking in from time to time but just dont have the energy to post… we miss you ! Ronnie Reciever of one of your wonderful poems – Hide quoted text — Show quoted text – Indeed…please do. Dan please repost JQT’s list, Dawn – that would be terrific! I remember jqt! Hugs Jane in AZ *Courage is the power to let go of the familiar* Bob, This was a wonderful tribute to ASHM! It brought to mind a list from way back around that time period…I joined ASHM at some point in ‘98 until some point in ‘99. I kept this list on the back of one of those clear pocket notebook binders. It happens to be kept right next to my desk (was an integral part of my nursing – held patient info). Anyway, the list was entitled "Headache Phrases that Irritate Us the Most". It looks like it was compiled by jqt. If anyone wants me to repost it, let me know… ~Dawn how eloquent as always Bob!  I remember other such discussions where this group was able to pull together despite adversity, convincing others and ourselves that we truly are a wonderful group of people.  ASHM is the first newsgroup I ever tried, back when I was having migs every single day and was locked in my apartment by the pain and ASHM was all there was. There was a Magic Bus going on then, and they let me hitch a ride, never questioning my newsgroup ignorance.  I never got so many cyber hugs, and have been here ever since, though sometimes only in the background! Thanks everyone – and you too Bob for reminding us of our unity and love. Jane in AZ *Courage is the power to let go of the familiar* ASHM Forever! I got to thinking the other day that things really have been peaceful  around ASHM for quite a while now. I hope it isn’t bad luck to say this. I have  had only one brief experience with a news group other than ASHM. The one I did  visit (over a year ago) was called ASC-P (I believe that’s the right  designation). I made less than a dozen posts there before I found out that it was a  place — at least then — where the pain suffered by the subscribers was nearly  matched by the pain they inflicted on one another. Perhaps it’s not still that  way — I hope not. I may have come and gone at a bad time, but I promise you that I  don’t want to go back to find out. Although conflict never was much of a problem with us, there have been a  few isolated moments. With this in mind, I decided this morning to look at  some old ASHM threads to see how well, or how poorly, we have handled unrest within  OUR group in the past. Most of our posts are available on Google’s archives at <http://groups.google.com and, since the various threads can’t be sorted between "Conflict" and "Non-Conflict" I had to make some random stabs  before I found what I wanted. I was looking for an instance where a potential flame  war had been averted by civility, and I think I got lucky. The thread I  stumbled on was entitled "NOT!!!! joining the group" and reading through it made me  proud to be associated with ASHM. The thread runs to 34 posts. It is dated November 1998. A lot of the contributors are no longer posting with us, but they have been replaced in  kind. I have included all 34 posts (below). Most of you won’t want to labor  through the whole thing, but here it is for reading in detail, or for sampling, whichever you like.  After reading it, my own conclusion was, and is, that  we are a civilized, superb group of extraordinarily intelligent,  appreciative, compassionate, and concerned people (did I miss  "perceptive"?), and why  someone has not long since organized a parade in our honor is beyond me. I can  hear _Stars and Stripes Forever_ and _76 Trombones_ even as I write. I realize  that such self-congratulatory praise as this risks drawing in a night crawler  or two from the outside. If that happens you have my sincere apology, but it  wouldn’t change a thing with such a civilized group as US!. I have left the dialog untouched. Where I felt a need to comment, I have included same in brackets. BobB MESSAGE 1 in thread I have been lurking here for more than a month. I thought this was somewhere I could find support for conditions I will not describe. I have suffered for most of my life alone, I can continue to do so. I have enough trouble with neighbors and family that I will not expose myself to a bunch of flaming strangers. [By "a bunch of flaming strangers" twxtt meant us. I do not know what  occasioned her resentment. From what I have observed OUTSIDE  ASHM however, such a  post would most likely have signaled the start of a free-for-all. --- bb] MESSAGE 2 in thread I have been lurking here for more than a month. I thought this was somewhere I could find support for conditions I will not describe. I have suffered for most of my life alone, I can continue to do so. I have enough trouble with neighbors and family that I will not expose myself to a bunch of flaming strangers. Very sensible decision not to expose yourself to a bunch of flaming  strangers! But many of us wouldn’t be strangers if you got to know us ; ). You can still find support for headaches, and will most certainly learn a great  deal about medication treatments and options if you continue to read our ng. I wish you well Anne "You must see the infinite, i.e., the universal,  in your particular, or  it is only gossip."–O.W.Holmes, Jr. MESSAGE 3 in thread I have been lurking here for more than a month. I thought this was somewhere I could find support for conditions I will not describe. Can only assume then that they are related to headache somehow or another.  One of the great things about ASHM is our ability to not only find support, but give it to others as well. I have suffered for most of my life alone, I can continue to do so. I have enough trouble with neighbors and family that I will not expose myself to a bunch of flaming strangers. Actually, I hadn’t noticed a "bunch" of flaming strangers here…a couple of people having a dispute,  yes. It’s a shame that after more than a month of lurking here you weren’t able to see beyond the current circumstances to notice all of the sharing, caring, concern and occasional humor that abounds here as well.  Since you’ve suffered like so many of us, you probably could have gotten and given much here. I hope you will reconsider.  Wishing you many pain- free days ahead. Judy "Close your eyes and surrender to your darkest dreams! Purge your thoughts of the life you knew before! Close your eyes, let your spirit start to soar! And you’ll live as you’ve never lived before . . ." MESSAGE 4 in thread Please just take a deep breath .. Shake your head but stay with us.  If you think that the ng is a little off center now wait until after Christmas when I find out someone got a bigger and better present than I did…  :) Good Luck… RonMum Queen Of Hugs Don"t Be Reckless With Other Peoples Hearts… Don’t Put Up With People Who Are Reckless With YOURS MESSAGE 5 in thread

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Response:

New patient info

Question:

http://www.dystonia-foundation.org/forums/asd/ This URL will take you to the Dystonia Medical Research Foundation Bulletin Board. At the top of the page, you can click on Main Page for written information. You can get in touch with them for names of doctors, etc. at the address below. Dystonia Medical Research Foundation One East Wacker Drive Chicago, IL USA 60601-1905 Tel: (312) 755-0198 or (800) 377-DYST Fax: (312) 803-0138 , Mindy

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Hi! I have been suffering with muscle contractions in my hands for a little over five years. Recently the contractions have begun in my back and sometimes in my legs and arms, jaw and other places. I recently saw a neurologist who mentioned Writer’s Cramp and so I looked it up and read all I could find. Dystonia sounds like what I have been living with, however I am having a difficult time getting the dx as he thinks that since it is not just in my hands it can’t be writer’s cramp. I have a few questions for those around here are knowledgable. Do others who have this also expereince muscle pain, extreme fatigue with use as well as a general decline in muscle strength? Muscle twitches that can be seen by others? Does anyone get any benefit from muscle relaxants? I am in my late twenties. What are the long-term outcomes from this? I am thinking about finding a neurologist that specializes in this to see what can be done. Is there a good place to find a doctor? THANKS SO VERY MUCH!!!!

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Wife had bonescan….Post Depo-Provera

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We have no record previous to the Depo-Provera shot but

wonder now if it can do damage in 9 months (3 injections.)  She wont be taking anymore DP injections and we have a second opinion on a on March 13.   The doc wants her to take Vitamin D daily, 1500 mg of Calcium daily, and Fosamax once a week.  Opinions are appreciated. Depo Provera has been implicated in bone loss. (its listed in the precautions and patient info given with the medication) Some "good news’..  In Sept 2002 the Natl Inst Health release shows study that women were able to recover bone after stopping the depo provera. Here is a link to article on Bone loss and Depo Provera http://www.nih.gov/news/pr/sep2002/nichd-06.htm Hopefully your wife has dodged bullet and her bone density will improve. Take care Eileen K

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Hi Joe Like your wife, I also had a bone scan that showed that I had osteopenia, it was found in my hips, back and lower neck (not all my neck was scanned).  I had been on Depo-Provera Shots prior to 1998 (for over a year) and taken off them just before my wedding in 1998, it was was given medication that consisted of an orange drink and tablets, (I’ve forgotten the name), anyway, this didn’t work (I have EDS), and I ended up in hospital … yikes, with uncontrollable spasms, and hyperventilation ….. I know Eileen mentions that bone density problems are mentioned in the Depo-Provera leaflet, but because I was given the DPShots, I was never shown the leaflet, so didn’t know. Best wishes — Lorraine visit our web pages at www.astspace.demon.co.uk (follow the links)

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Hi Joe, Yup it’s quite possible to have it do damage in 9 months, as I’ve got damage from 1 shot of Lupron.  I was just recently diagnosed with mild Osteopenia in my back and Moderate Osteopenia in my left hip.  I’m on the Vit D and Calcium now daily as well.  I also have to do a lot of weight bearing exercise.  I haven’t been given anything else to counteract it or reverse it other than that. Arianna — Thank you! Webmaster of http://www.endosupp.com – a support site for endometriosis sufferers. Spreading the word…  Visit http://archive.endosupp.com – EndoSupp’s Archive site. Mailing List at: http://groups.yahoo.com/group/endosupp

Hi there, Well wife had a bone scan and the results show Osteopenia in hip and arm …back is normal.  We have no record previous to the Depo-Provera shot but wonder now if it can do damage in 9 months (3 injections.)  She wont be taking anymore DP injections and we have a second opinion on a on March 13. The doc wants her to take Vitamin D daily, 1500 mg of Calcium daily, and Fosamax once a week.  Opinions are appreciated. Joe McC

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What is EDS?  Why did it cause the  uncontrollable spasms, and hyperventilation? Joe – Hide quoted text — Show quoted text – Hi Joe Like your wife, I also had a bone scan that showed that I had osteopenia, it was found in my hips, back and lower neck (not all my neck was scanned).  I had been on Depo-Provera Shots prior to 1998 (for over a year) and taken off them just before my wedding in 1998, it was was given medication that consisted of an orange drink and tablets, (I’ve forgotten the name), anyway, this didn’t work (I have EDS), and I ended up in hospital … yikes, with uncontrollable spasms, and hyperventilation ….. I know Eileen mentions that bone density problems are mentioned in the Depo-Provera leaflet, but because I was given the DPShots, I was never shown the leaflet, so didn’t know. Best wishes — Lorraine visit our web pages at www.astspace.demon.co.uk (follow the links)

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Dear Joe What is EDS?  Why did it cause the  uncontrollable spasms, and hyperventilation?

EDS is Ehlers Danlos Syndrome (I was born with it).  I gather the uncontrollable spasms and hyperventilation were due to the medication, instead of the calcium going into the bone, it went into muscles and tissues instead.  To be honest with you, I cannot remember the end of 1998 and nearly all of 1999 because of it.  My darling husband, said, although it was a difficult time in both of our lives because of it, we fought it and won.  However, I had to undergo a total hysterectomy at the end of 2001 because of the DP and medication, I gather.  I’ve also got an abnormality in my Antibody B because of it, but nobody has an answer for this.  Fuller details about EDS and how it affects my life, can be found on our website mentioned below, follow the links, let me know what you think. With best wishes, — Lorraine NightScenes 2003 – Paul’s full colour A5 booklet on what to see in the night sky for 2003. Professionally printed. Only 4 UKP + 1UKP P&P. Go to our web site – Astrospace  http://www.astspace.demon.co.uk for further details.

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I was wrong on med….they gave her Actonel not fosamax,,,,,sorry for any confusion Joe

– Hide quoted text — Show quoted text – Hi there, Well wife had a bone scan and the results show Osteopenia in hip and arm …back is normal.  We have no record previous to the Depo-Provera shot but wonder now if it can do damage in 9 months (3 injections.)  She wont be taking anymore DP injections and we have a second opinion on a on March 13. The doc wants her to take Vitamin D daily, 1500 mg of Calcium daily, and Fosamax once a week.  Opinions are appreciated. Joe McC

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Hi there, Well wife had a bone scan and the results show Osteopenia in hip and arm …back is normal.  We have no record previous to the Depo-Provera shot but wonder now if it can do damage in 9 months (3 injections.)  She wont be taking anymore DP injections and we have a second opinion on a on March 13. The doc wants her to take Vitamin D daily, 1500 mg of Calcium daily, and Fosamax once a week.  Opinions are appreciated. Joe McC

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