Question:

Marilyn, It’s only a short term effect that goes away after a few weeks.  IMHO, it is the best drug out there for nerve pain and worth the effort to stick it out if you can. Sue – Hide quoted text — Show quoted text – I just took my first dose of Neurontin last night (3 A.M.). It helped the burning in my leg, but I woke up at 6 A.M. really groggy. Played golf at 10:30 and was just awful. I have never had so much trouble hitting a damned golf ball. It was like my coordination was gone. I did get better as the day wore on. So tell me guys, was I just having a bad day, or does Neurontin have this kind of effect? Marilyn

Response:

It did this to me.  Solution was to split the dose, and take some earlier in the evening.  Talk to your doc about that possibility. Chris Owens – Hide quoted text — Show quoted text – I just took my first dose of Neurontin last night (3 A.M.). It helped the burning in my leg, but I woke up at 6 A.M. really groggy. Played golf at 10:30 and was just awful. I have never had so much trouble hitting a damned golf ball. It was like my coordination was gone. I did get better as the day wore on. So tell me guys, was I just having a bad day, or does Neurontin have this kind of effect? Marilyn

Response:

yes it does help a bit for some types of pain.  It has helped me for years now.  If you have burning type pain you should be checked for rsd.  Mention it to your doctor, cause if it is it should be treated right away.                                           Marie

Response:

I know I come late to the discussion, but can someone tell me, possibly by e-mail, what Neurontin is, what is it used for and if it is another opiate? Thanks, Joani

Response:

James- Last year I had a stroke which affected my thalamus which left me with total left hemisphere pain of all sorts. I’ve found that neurontin relieves specific kinds of pain. In my case it only helps with the constant burning I feel. Perhaps it could help. It’s only slight sedative; for me it caused some diarrhea in the large doses (2700mg/daily). I’ve read that it’s pretty safe. Carl in San Francisco.<< Does any body know if neurontin is helpful for chronic pain?  

Response:

I just took my first dose of Neurontin last night (3 A.M.). It helped the burning in my leg, but I woke up at 6 A.M. really groggy. Played golf at 10:30 and was just awful. I have never had so much trouble hitting a damned golf ball. It was like my coordination was gone. I did get better as the day wore on. So tell me guys, was I just having a bad day, or does Neurontin have this kind of effect? Marilyn

Response:

neurontin has practically eliminated my hand tremors and  restless leg syndrome and helps with  my  electrical blasts of nerve pain   it takes awhile to build up to a theraputical dosage pat

Response:

I’m hoping I can try Neurontin. Doc took me off meds that worked (having surgery soon) and I’m in horrible shape. Bad pain. Trying Ultram today, but its not working well, and its giving me a terrible headache (or worsening the one I already had – hard to tell). Does anyone know if it works on muscle spasmed pain and bursitis pain and resulting nerve involvement?? Kristine

Response:

Neurontin is the best thing I have found to work on the nerve pain.  I tried Baclofen for the muscle spams associated with the nerve pain and it worked, but I turned out to be highly allergic to it.  But it did work.  For me the opiates alone did not releave much pain.  I needed the Neurontin too.  If your doctor is open to keep trying to find a combination, you will finally get it right. Good Luck Sue – Hide quoted text — Show quoted text – I’m hoping I can try Neurontin. Doc took me off meds that worked (having surgery soon) and I’m in horrible shape. Bad pain. Trying Ultram today, but its not working well, and its giving me a terrible headache (or worsening the one I already had – hard to tell). Does anyone know if it works on muscle spasmed pain and bursitis pain and resulting nerve involvement?? Kristine

Response:

I, too, have been helped by neurontin.  I take it for post-herpetic neuralgia (nerve damage from shingles), and am able to tolerate about 1800 mg. spread out over the day, with the strongest doses taken in the late afternoon and at bedtime.  If I take much more, I get too spacy. The nice thing about neurontin is that you can try it and keep increasing it to a point where it is effective without bad side effects.  There is no "standard" dose, which allows it to be tailored to each patient’s needs and reactions. Good luck! Barb in Maryland

Response:

Hi, I’m like Eleanor in that I too take 3600 mg /day.  I have found it is the best weapon in my personal arsenal against nerve pain.  I don’t know if it is effective against any other type of pain.  However, I have side effects including memory impairment and lack of concentration.  But, I don’t have anywhere near the level of pain I used to.  The other drugs I use are 75 mg of Nortriptylene at night to sleep, 300 mg of Amantadine (an antiviral which has surprisinging helped with the pain) and Duragesic 25mg.  Sometimes it takes a lot of work to find the right mix.  Be willing to try anything (and have a doctor that isn’t afrain of experimentation) and eventually you will come up with a winning combination. Good Luck, Sue – Hide quoted text — Show quoted text – I take 3600 mg of Neurontin per day (THAT IS NOT A TYPO) and 600 mg of Tegretol. My Neurontin was increased over a period of a year. The combo has helped alot with burning/stabbing pain. I have not had any side effects from it though many people do. Give it a try. Does any body know if neurontin is helpful for chronic pain? I saw an article in the New York Times where the introduced it as a new type of drug to replace dilantin. If any body is useing it I would be grateful for their input. I am trying to stay off of narcodics by using ultram which is like taking two asperin for a migraine. Thanks Jim Lesperance — Intrinsic Development, an audio psychology company producing clinical relaxation, imagery, narratives with quieting music for cancer, chronic pain, bereavement, etc  1-800-354-2858  http://intrinsicdevelopment.com

Response:

I take 2400 mgs Neurontin (800 mgs tid) and am getting wonderful relief from the firelike pain in my right anterior thigh. It is the first thing that I have found that works on that burning pain. Now my back is another story. I use 60 mgs MS Contin (30 mgs bid) and Percocet (one as needed) for breakthrough. It’s working OK but I think that I need to up the Contin to get better long-acting relief. I do not need a Percocet every day but by the evening I need one more often than not. Hopefully, I can reduce or even stop using Percocet with a higher dose of MS Contin. Take care all. – Hide quoted text — Show quoted text – I take 3600 mg of Neurontin per day (THAT IS NOT A TYPO) and 600 mg of Tegretol. My Neurontin was increased over a period of a year. The combo has helped alot with burning/stabbing pain. I have not had any side effects from it though many people do. Give it a try. Does any body know if neurontin is helpful for chronic pain? I saw an article in the New York Times where the introduced it as a new type of drug to replace dilantin. If any body is useing it I would be grateful for their input. I am trying to stay off of narcodics by using ultram which is like taking two asperin for a migraine. Thanks Jim Lesperance — Intrinsic Development, an audio psychology company producing clinical relaxation, imagery, narratives with quieting music for cancer, chronic pain, bereavement, etc  1-800-354-2858  http://intrinsicdevelopment.com

– David F. Mishiwiec Sr. ASAP, American Society for Action on Pain Connecticut Placement Representative http://www.megahits.com/mish/Pain.html American Society for Action on Pain. http://www.skipbaker.com Skip Baker, President "Striving for ADEQUATE and ongoing Pain Medication, for all who suffer" P.O. Box 3046, Williamsburg, VA 23187 (757) 229-1840. Skip’s Personal Pain Web Site: http://www.widomaker.com/~skipb/skiphome.htm.html Help for pain patients: http://www.widomaker.com/~skipb/panic.html World Wide Conference on Pain: http://www.pain.com/painclinics/us.cfm For DOCTORS willing to help us: http://www.widomaker.com/~skipb/docsneeded.html Mail concerning listserver inquiries to join ASAP should be addressed to Neither ASAP nor its members are engaged in the rendering of medical, psychological, financial, legal or other professional services, and assumes no liability therefor.

Response:

James, I was started on Neurontin 300mg’s and beleive it or not after a week on it I regained the feeling in my index finger which I had lost since I had an  injury in my neck.  I was upped about two weeks later to 400mg’s and had a really bad reaction to the medication.  I think Neurontin is a wonderful medication for a lot of people =)  It just didn’t work out for me.  Now I take 25mg’s of Pamelor (Nortriptyline) at night time and I still have mananged to keep my finger feeling good and I also sleep really well =) I think it is worth a try =) Kim

Response:

I take 3600 mg of Neurontin per day (THAT IS NOT A TYPO) and 600 mg of Tegretol. My Neurontin was increased over a period of a year. The combo has helped alot with burning/stabbing pain. I have not had any side effects from it though many people do. Give it a try. – Hide quoted text — Show quoted text – Does any body know if neurontin is helpful for chronic pain? I saw an article in the New York Times where the introduced it as a new type of drug to replace dilantin. If any body is useing it I would be grateful for their input. I am trying to stay off of narcodics by using ultram which is like taking two asperin for a migraine. Thanks Jim Lesperance — Intrinsic Development, an audio psychology company producing clinical relaxation, imagery, narratives with quieting music for cancer, chronic pain, bereavement, etc  1-800-354-2858  http://intrinsicdevelopment.com

Response:

Does any body know if neurontin is helpful for chronic pain? I saw an article in the New York Times where the introduced it as a new type of drug to replace dilantin. If any body is useing it I would be grateful for their input. I am trying to stay off of narcodics by using ultram which is like taking two asperin for a migraine. Thanks Jim Lesperance — Intrinsic Development, an audio psychology company producing clinical relaxation, imagery, narratives with quieting music for cancer, chronic pain, bereavement, etc  1-800-354-2858  http://intrinsicdevelopment.com

Response:

Does any body know if neurontin is helpful for chronic pain? I saw an article in the New York Times where the introduced it as a new type of drug to replace dilantin.

Well my experience so far is that it might be helping, but at 1200 mgs daily it isn’t making a whole lot of difference. It does make me feel like I am being attacked by gravity when I get up in the morning as well as having some difficulty with coordination and speech at times. Jim Mas rapido! http://members.aol.com/Motomij/yourhere.html

Response:

Question:

Well, wish me luck, gang.  I know others have been forced to do this, I’m not the first, but it sure is scary.  I see my doc on the 24th of April, and will ask for the record transfer then.

Albert, Good luck with the second opinion!  If this other pain clinic has more to offer and is able to try other drugs or even increase your methadone, you might want to switch to that clinic… See what their opinions on the Morphine Pump are as well.  I honestly feel all other options should be exhausted first, such as  increased methadone, different medicines, and even IM medicines at home like Dilaudid.   Even if an increased Methadone were to work another year or two, you would then be two more years away at potentially using the Morphine pump. Speaking of not going over 80mg,  Some junkies on the Methadone Maintanance program are talking over 100mg.   Let’s see, junkies in Methadone Maintanance are getting high doses, and a certain doctor for a pain patient doesn’t want to go over 200mg/day, with some going as high as 500+mg/day. As such, like other narcotics(Oxycontin, MScontin, etc) that have no ceiling, I don’t believe Methadone has any ceilng either. I would look into this one further — something smells fishy… Skippy P.S. Thanks for your note Albert ,, I’m not sure if I replied to your message or not, as I was completely disoriented from the anesthesia at the time I wrote it… I really don’t knoe if it made it out … if it did, I hope it made sense and wasn’t what seemed to be psychotic bablings.. Everyone told me I made no sense last night… My eyesight is coming back, buch better now, and I seem to be stumbling a lot less this afternoon .. My vision is somewhat blurred, but not as bad.. need to sqwint now to see, it’s no longer the covering of one eye like it was…  Skippy

Response:

        Best of luck Albert, I’m assuming you have Fibro?  Correct me if I’m wrong please                     Pam

         Pam, Truly sorry for the delay in replying, sometimes life just really seems to sh*t on me without end.  I am better now, tho, & wanted to answer your question.  My main pain source is a bad herniation at L2-L3.  I’ve had a diskectomy & a laminotomy on the bad disk.  While bowel & bladder control have returned, and the sciatic pain is less, the pain in my lower back is still horrific.  I also have an injured shoulder from being a forward in soccer, and altho the cortisone shots help, I can still wake up wimpering, crying, & moaning, when I roll over on it the wrong way.  To round out the problems, I have what the doc thinks is osteo-arthritis in both knees, both hips, and possibly my hands.  The knees & hips are painful enough I would consider giving up walking if not for the P/T I do at home, TENS unit, & pain meds. So that’s the story.  If I can ever be of any help, just give me a holler thru email.  Although I ‘ve been on disability about 6 1/2 years now, I continue to try & give something back to society.  Just part of my belief system.          With Love, Caring, & Peace,                   Albert, Mountain Removal Project Engineer — Tis easier to go thru the eye of a needle, than the knee of an idol                          web    http://www.schmendrik.org

Response:

This sounds really promising!  Too bad, they’re not all in the same facility, but if they do the dirty deed and actually TALK to one another, that’s a miracle in itself in my experience. – Hide quoted text — Show quoted text –         Greetings Everyone, Frustration can make a person do strange things, even make them temporarily brave, when they don’t feel very brave.  I guess I found out today that this can even apply to little old me.  Yes, dear friends, I have gone & done the dirty deed, I have investigated a new pain clinic! Yipeeeeeeeeeeeee! Without criticizing my old doc, I suggested to the intake person that jumping from 8 – 10MG Dolophine tablets a day to a Morphine pump implant seemed like skipping a lot of useful, non-invasive possibilities.  I also casually informed this woman that I am familiar with computers, and happened to browse a group on Usenet called alt.support.chronic-pain.  It seems that the claim that greater than 80MG of Dolophine a day is just not useful turns out to be false.  I suggested that given the large number of patients who I read about that were taking more than 80MG a day, ALL of those doctors couldn’t be wrong.  Perhaps they knew something that the folks at my pain clinic just didn’t know. I quickly followed this up with the fact that I am using my TENS unit, P/T done at home (my time at the clinic expired some time ago, and they are just not used to treating folks with chronic pain who will be that way all their lives), trigger point injections, daily mild aerobic exercise, and also narcotic pain meds daily, with a second pain for break thru. Being new at the task of searching for pain clinics, I asked if this was a detox clinic.  The woman asked what I meant?  I responded that some clinics simply get people off all their meds, and then use any technique that doesn’t involve schedule II narcotics.  I explained that I had a concern about that, because I had tried life without the help of pain medication, and had found the suffering intolerable.  I told her that I was looking for a full spectrum approach, that would include a variety of treatments, including pain medication, muscle relaxants, laxatives, etc. She told me that they had that type of approach to treating pain. As opposed to the one Anesthesiologist that my current clinic has, they have seven docs, not counting P/T, Neurology, & Psychiatry.  Although they are in a separate building ALL to themselves, they are affiliated with a large hospital here in town.  She gave me the name of an Anesthesiologist who is almost entirely based in this location. (even close to home, golly gee! <g)  I told her that I would be telling my current doc that I wanted a second opinion prior to having a Morphine pump implanted, and was going to pay for a second opinion, and wanted my medical records sent to the clinic in question.  I hope this works, I really don’t want to burn any bridges at this point in time. Well, wish me luck, gang.  I know others have been forced to do this, I’m not the first, but it sure is scary.  I see my doc on the 24th of April, and will ask for the record transfer then.         With Love, Caring, & Peace,                  Albert, Mountain Removal Project Engineer — Tis easier to go thru the eye of a needle, than the knee of an idol                       web    http://www.schmendrik.org

Debbie Life is a test. It is only a test. If this were real life, we would have been given better instructions.

Response:

You’re brave Albert, I’d be scared to death to leave what I’ve got now for the unknown but I guess it’s the only way things will change for you. Good luck. love, catherine

– Hide quoted text — Show quoted text –          Greetings Everyone, Frustration can make a person do strange things, even make them temporarily brave, when they don’t feel very brave.  I guess I found out today that this can even apply to little old me.  Yes, dear friends, I have gone & done the dirty deed, I have investigated a new pain clinic! Yipeeeeeeeeeeeee! Without criticizing my old doc, I suggested to the intake person that jumping from 8 – 10MG Dolophine tablets a day to a Morphine pump implant seemed like skipping a lot of useful, non-invasive possibilities.  I also casually informed this woman that I am familiar with computers, and happened to browse a group on Usenet called alt.support.chronic-pain.  It seems that the claim that greater than 80MG of Dolophine a day is just not useful turns out to be false.  I suggested that given the large number of patients who I read about that were taking more than 80MG a day, ALL of those doctors couldn’t be wrong.  Perhaps they knew something that the folks at my pain clinic just didn’t know. I quickly followed this up with the fact that I am using my TENS unit, P/T done at home (my time at the clinic expired some time ago, and they are just not used to treating folks with chronic pain who will be that way all their lives), trigger point injections, daily mild aerobic exercise, and also narcotic pain meds daily, with a second pain for break thru. Being new at the task of searching for pain clinics, I asked if this was a detox clinic.  The woman asked what I meant?  I responded that some clinics simply get people off all their meds, and then use any technique that doesn’t involve schedule II narcotics.  I explained that I had a concern about that, because I had tried life without the help of pain medication, and had found the suffering intolerable.  I told her that I was looking for a full spectrum approach, that would include a variety of treatments, including pain medication, muscle relaxants, laxatives, etc. She told me that they had that type of approach to treating pain. As opposed to the one Anesthesiologist that my current clinic has, they have seven docs, not counting P/T, Neurology, & Psychiatry.  Although they are in a separate building ALL to themselves, they are affiliated with a large hospital here in town.  She gave me the name of an Anesthesiologist who is almost entirely based in this location. (even close to home, golly gee! <g)  I told her that I would be telling my current doc that I wanted a second opinion prior to having a Morphine pump implanted, and was going to pay for a second opinion, and wanted my medical records sent to the clinic in question.  I hope this works, I really don’t want to burn any bridges at this point in time. Well, wish me luck, gang.  I know others have been forced to do this, I’m not the first, but it sure is scary.  I see my doc on the 24th of April, and will ask for the record transfer then.          With Love, Caring, & Peace,                   Albert, Mountain Removal Project Engineer — Tis easier to go thru the eye of a needle, than the knee of an idol                        web    http://www.schmendrik.org —–= Posted via Newsfeeds.Com, Uncensored Usenet News =—– http://www.newsfeeds.com – The #1 Newsgroup Service in the World! —–==  Over 80,000 Newsgroups – 16 Different Servers! =—–

Response:

Why don’t you just ask your current doc to up your methadone dose? 80mgs is not that "huge" of a dose.  I have a good friend on 1200/mgs daily, and she functions fine.

His doc doesnt want to go above 80mg and told Albert that he should see about the pump implant. Albert is seeking this second opinion because he feels that there are too many other medications and dosages out there to try before going to the pump, so that’s why he is seeking out another opinion. Nikki "… lost in the darkness of my own circumstance, criticizing echoes leaving me awake in the night… the barrier and blockades that keep me safe and in control while I pretend that I am okay… "

Response:

 Thanks for your reply Albert and I hope this finds you feeling much better                 Pam

– Hide quoted text — Show quoted text –         Best of luck Albert, I’m assuming you have Fibro?  Correct me if I’m wrong please                     Pam          Pam, Truly sorry for the delay in replying, sometimes life just really seems to sh*t on me without end.  I am better now, tho, & wanted to answer your question.  My main pain source is a bad herniation at L2-L3.  I’ve had a diskectomy & a laminotomy on the bad disk.  While bowel & bladder control have returned, and the sciatic pain is less, the pain in my lower back is still horrific.  I also have an injured shoulder from being a forward in soccer, and altho the cortisone shots help, I can still wake up wimpering, crying, & moaning, when I roll over on it the wrong way.  To round out the problems, I have what the doc thinks is osteo-arthritis in both knees, both hips, and possibly my hands.  The knees & hips are painful enough I would consider giving up walking if not for the P/T I do at home, TENS unit, & pain meds. So that’s the story.  If I can ever be of any help, just give me a holler thru email.  Although I ‘ve been on disability about 6 1/2 years now, I continue to try & give something back to society.  Just part of my belief system.          With Love, Caring, & Peace,                   Albert, Mountain Removal Project Engineer — Tis easier to go thru the eye of a needle, than the knee of an idol                          web    http://www.schmendrik.org

Response:

Why don’t you just ask your current doc to up your methadone dose? 80mgs is not that "huge" of a dose.  I have a good friend on 1200/mgs daily, and she functions fine. Ask your doc to increase your meds if they are not working.

Response:

        Best of luck Albert, I’m assuming you have Fibro?  Correct me if I’m wrong please                     Pam

– Hide quoted text — Show quoted text –          Greetings Everyone, Frustration can make a person do strange things, even make them temporarily brave, when they don’t feel very brave.  I guess I found out today that this can even apply to little old me.  Yes, dear friends, I have gone & done the dirty deed, I have investigated a new pain clinic! Yipeeeeeeeeeeeee! Without criticizing my old doc, I suggested to the intake person that jumping from 8 – 10MG Dolophine tablets a day to a Morphine pump implant seemed like skipping a lot of useful, non-invasive possibilities.  I also casually informed this woman that I am familiar with computers, and happened to browse a group on Usenet called alt.support.chronic-pain.  It seems that the claim that greater than 80MG of Dolophine a day is just not useful turns out to be false.  I suggested that given the large number of patients who I read about that were taking more than 80MG a day, ALL of those doctors couldn’t be wrong.  Perhaps they knew something that the folks at my pain clinic just didn’t know. I quickly followed this up with the fact that I am using my TENS unit, P/T done at home (my time at the clinic expired some time ago, and they are just not used to treating folks with chronic pain who will be that way all their lives), trigger point injections, daily mild aerobic exercise, and also narcotic pain meds daily, with a second pain for break thru. Being new at the task of searching for pain clinics, I asked if this was a detox clinic.  The woman asked what I meant?  I responded that some clinics simply get people off all their meds, and then use any technique that doesn’t involve schedule II narcotics.  I explained that I had a concern about that, because I had tried life without the help of pain medication, and had found the suffering intolerable.  I told her that I was looking for a full spectrum approach, that would include a variety of treatments, including pain medication, muscle relaxants, laxatives, etc. She told me that they had that type of approach to treating pain. As opposed to the one Anesthesiologist that my current clinic has, they have seven docs, not counting P/T, Neurology, & Psychiatry.  Although they are in a separate building ALL to themselves, they are affiliated with a large hospital here in town.  She gave me the name of an Anesthesiologist who is almost entirely based in this location. (even close to home, golly gee! <g)  I told her that I would be telling my current doc that I wanted a second opinion prior to having a Morphine pump implanted, and was going to pay for a second opinion, and wanted my medical records sent to the clinic in question.  I hope this works, I really don’t want to burn any bridges at this point in time. Well, wish me luck, gang.  I know others have been forced to do this, I’m not the first, but it sure is scary.  I see my doc on the 24th of April, and will ask for the record transfer then.          With Love, Caring, & Peace,                   Albert, Mountain Removal Project Engineer — Tis easier to go thru the eye of a needle, than the knee of an idol                        web    http://www.schmendrik.org —–= Posted via Newsfeeds.Com, Uncensored Usenet News =—– http://www.newsfeeds.com – The #1 Newsgroup Service in the World! —–==  Over 80,000 Newsgroups – 16 Different Servers! =—–

Response:

         Greetings Everyone, Frustration can make a person do strange things, even make them temporarily brave, when they don’t feel very brave.  I guess I found out today that this can even apply to little old me.  Yes, dear friends, I have gone & done the dirty deed, I have investigated a new pain clinic! Yipeeeeeeeeeeeee! Without criticizing my old doc, I suggested to the intake person that jumping from 8 – 10MG Dolophine tablets a day to a Morphine pump implant seemed like skipping a lot of useful, non-invasive possibilities.  I also casually informed this woman that I am familiar with computers, and happened to browse a group on Usenet called alt.support.chronic-pain.  It seems that the claim that greater than 80MG of Dolophine a day is just not useful turns out to be false.  I suggested that given the large number of patients who I read about that were taking more than 80MG a day, ALL of those doctors couldn’t be wrong.  Perhaps they knew something that the folks at my pain clinic just didn’t know. I quickly followed this up with the fact that I am using my TENS unit, P/T done at home (my time at the clinic expired some time ago, and they are just not used to treating folks with chronic pain who will be that way all their lives), trigger point injections, daily mild aerobic exercise, and also narcotic pain meds daily, with a second pain for break thru. Being new at the task of searching for pain clinics, I asked if this was a detox clinic.  The woman asked what I meant?  I responded that some clinics simply get people off all their meds, and then use any technique that doesn’t involve schedule II narcotics.  I explained that I had a concern about that, because I had tried life without the help of pain medication, and had found the suffering intolerable.  I told her that I was looking for a full spectrum approach, that would include a variety of treatments, including pain medication, muscle relaxants, laxatives, etc. She told me that they had that type of approach to treating pain. As opposed to the one Anesthesiologist that my current clinic has, they have seven docs, not counting P/T, Neurology, & Psychiatry.  Although they are in a separate building ALL to themselves, they are affiliated with a large hospital here in town.  She gave me the name of an Anesthesiologist who is almost entirely based in this location. (even close to home, golly gee! <g)  I told her that I would be telling my current doc that I wanted a second opinion prior to having a Morphine pump implanted, and was going to pay for a second opinion, and wanted my medical records sent to the clinic in question.  I hope this works, I really don’t want to burn any bridges at this point in time. Well, wish me luck, gang.  I know others have been forced to do this, I’m not the first, but it sure is scary.  I see my doc on the 24th of April, and will ask for the record transfer then.          With Love, Caring, & Peace,                   Albert, Mountain Removal Project Engineer — Tis easier to go thru the eye of a needle, than the knee of an idol                        web    http://www.schmendrik.org —–= Posted via Newsfeeds.Com, Uncensored Usenet News =—– http://www.newsfeeds.com – The #1 Newsgroup Service in the World! —–==  Over 80,000 Newsgroups – 16 Different Servers! =—–

Response:

Question:

    Hi, I have been taking 5mgs of methadose two to three times a day for the last 5 months. I was upped to a max of 20mgs daily after a surgical procedure on my spine. I rarely took 20mg daily, usually just 15mgs daily. Anyway, I cannot tolerate the drowiness/tiredness caused by this medication. If I take a small dose (10mgs a day) I do not get sufficient pain relief and if I take more than that I am very tired, but get decent relief.

Response:

Looking at this from a very subjective point of view, there may be a cause for the problem of being under/over medicated.  If you have any problems related to your liver it is possible that the methadone is not being metabolized as it should be. I have progressive, advanced (stage 2) liver disease and over time my body slowly lost (but not yet completely) the ability to metabolize things as they used to. I went from very high doses of MS Contin (for example) and in the past year the dose has dropped from sometimes more than 1200 mgs/day to roughly 40 mgs of Dilaudid every day. I can no longer take any of the long-acting, sustained release opioid analgesics if I plan on doing anything more strenuous than staying awake – and sometimes this can be very difficult. To the point, you may want to ask your doc if blood work is a good idea; this can give you an idea of the state of your liver. Good luck! Dave L D Lamborne Home: http://painlinks.org

– Hide quoted text — Show quoted text –     Hi, I have been taking 5mgs of methadose two to three times a day for the last 5 months. I was upped to a max of 20mgs daily after a surgical procedure on my spine. I rarely took 20mg daily, usually just 15mgs daily. Anyway, I cannot tolerate the drowiness/tiredness caused by this medication. If I take a small dose (10mgs a day) I do not get sufficient pain relief and if I take more than that I am very tired, but get decent relief.

Response:

Question:

   I had an appointment with my Family Dr. today and he suggested dropping all the meds because they are not working for me!?  I take 300 mgs MS Contin, 1 mg Clonazepam, 150 mgs Amitriptyline, Vioxx, and 1200 mgs Neurontin.  I don’t know what the f#$k to do.  I apparently have the constitution of a barn yard animal.    On one hand I can see what the doc is saying.  I have severe DDD and multiple disc fragments free floating in my spinal canal and also have a couple that are trapped.  L4-5 is fused and a grade 2 spondylo. which is getting more painful each day.  I understand that anti inflammatories are not going to provide much relief and the same goes for the Neurontin because my back problems are very mechanically related.  If I don’t move I don’t hurt, however sitting and breathing are included in the movement reference. I don’t want to raise the amount of MS Contin because the difference in the amount of pain relief between the starting dosage of 60 mgs/day to 300 mgs/day is barely noticeable.  I also am not getting any relief from spasms while using the Clonazepam.  Amitriptyline is the only drug that is doing it’s intended purpose which is as a sleep aid.    Now on this hand, it is not my fault that the DR’s haven’t discovered the right drug combination that is going to work.  This is not any justification to drop all meds and leave me high and dry and alone, in pain without any new drugs to try.  I have told the pain clinic Drs and my family Dr that Demerol was the only med that provided me with any relief.  I get no feed back from them and am wondering why?  Is Demerol more liable to make a person more physically dependant than the MS Contin?  What’s the secret being kept from me? When I did get treatment with Demerol it was injected and I would like to know if their is a difference in the efficacy of the drug when taken orally as opposed to  the injected form?  I need help, advice, info, anything that may have worked for some of you! TIA   Sincerely Rob Hartley

Response:

Demerol is a nasty drug when used chronicly.  It is far harder for the body to metabolize and leaves ucky stuff behind that can cause problems (I’m sure either Dr. Work or Dave will help me out here and use the more technical terms to describe what this is — I don’t know the tech stuff — I do know what it does though).  It is not more *addictive* than the others, just far harder on your body and a very bad choice for chronic pain. That what you are currently taking is not helping is absolutely no reason to leave you high and dry with nothing.  If I were you I would remind the doctor that suggested this of the idea that it would be breaking his oath or vow to help if this is done.   Rather like telling a seizure patient that since Dilantin does not control all of the seizures that they will just have to have seizures.  Or someone with an infection that is resistant to penicillin that they cannot use erythromyacin or Keflex.  Or someone with high blood pressure that the first medicine tried does not reduce the elevated blood pressure that they will just have to have high blood pressure and have a stroke.  Perhaps if you put it that way he will understand what he is actually suggesting? There are other choices — several of them.  If MS Contin is the only one they have tried and the "amount of pain relief between the starting dosage of 60 mgs/day to 300mgs/day is barely noticeable" it is probably time to try one of the others.  Antiimflamitories may help if the problems are "mechanical".  Much of the pain with arthritis is "mechanical" too, and they are usually very important in treating that.  They do help me with that pain — they just make me vomit blood very very quickly — I really wish I could take them.  And yes, even the new Cox II ones do this — Vioxx, in 9 days, left me with the first ulcer in 10 years, confirmed by an upper GI, but helped a great deal with the pain. — Ruada

– Hide quoted text — Show quoted text –    I had an appointment with my Family Dr. today and he suggested dropping all the meds because they are not working for me!?  I take 300 mgs MS Contin, 1 mg Clonazepam, 150 mgs Amitriptyline, Vioxx, and 1200 mgs Neurontin.  I don’t know what the f#$k to do.  I apparently have the constitution of a barn yard animal.    On one hand I can see what the doc is saying.  I have severe DDD and multiple disc fragments free floating in my spinal canal and also have a couple that are trapped.  L4-5 is fused and a grade 2 spondylo. which is getting more painful each day.  I understand that anti inflammatories are not going to provide much relief and the same goes for the Neurontin because my back problems are very mechanically related.  If I don’t move I don’t hurt, however sitting and breathing are included in the movement reference. I don’t want to raise the amount of MS Contin because the difference in the amount of pain relief between the starting dosage of 60 mgs/day to 300 mgs/day is barely noticeable.  I also am not getting any relief from spasms while using the Clonazepam.  Amitriptyline is the only drug that is doing it’s intended purpose which is as a sleep aid.    Now on this hand, it is not my fault that the DR’s haven’t discovered the right drug combination that is going to work.  This is not any justification to drop all meds and leave me high and dry and alone, in pain without any new drugs to try.  I have told the pain clinic Drs and my family Dr that Demerol was the only med that provided me with any relief.  I get no feed back from them and am wondering why?  Is Demerol more liable to make a person more physically dependant than the MS Contin?  What’s the secret being kept from me? When I did get treatment with Demerol it was injected and I would like to know if their is a difference in the efficacy of the drug when taken orally as opposed to  the injected form?  I need help, advice, info, anything that may have worked for some of you! TIA   Sincerely Rob Hartley

Response:

I agree with Ruada… if the MS Contin isn’t working, then it’s time to try some of the others… Oxycontin, Methadone, or combinations of the three… or even combinations with other narcs. And, if you’re not getting totally looped out at the level you’re taking (making it impossible to function), then why not take a higher dose? Good luck… I hope you don’t give up just because your doctor is sounding like a jerk. Will – Hide quoted text — Show quoted text – Demerol is a nasty drug when used chronicly.  It is far harder for the body to metabolize and leaves ucky stuff behind that can cause problems (I’m sure either Dr. Work or Dave will help me out here and use the more technical terms to describe what this is — I don’t know the tech stuff — I do know what it does though).  It is not more *addictive* than the others, just far harder on your body and a very bad choice for chronic pain. That what you are currently taking is not helping is absolutely no reason to leave you high and dry with nothing.  If I were you I would remind the doctor that suggested this of the idea that it would be breaking his oath or vow to help if this is done.   Rather like telling a seizure patient that since Dilantin does not control all of the seizures that they will just have to have seizures.  Or someone with an infection that is resistant to penicillin that they cannot use erythromyacin or Keflex.  Or someone with high blood pressure that the first medicine tried does not reduce the elevated blood pressure that they will just have to have high blood pressure and have a stroke.  Perhaps if you put it that way he will understand what he is actually suggesting? There are other choices — several of them.  If MS Contin is the only one they have tried and the "amount of pain relief between the starting dosage of 60 mgs/day to 300mgs/day is barely noticeable" it is probably time to try one of the others.  Antiimflamitories may help if the problems are "mechanical".  Much of the pain with arthritis is "mechanical" too, and they are usually very important in treating that.  They do help me with that pain — they just make me vomit blood very very quickly — I really wish I could take them.  And yes, even the new Cox II ones do this — Vioxx, in 9 days, left me with the first ulcer in 10 years, confirmed by an upper GI, but helped a great deal with the pain. — Ruada

Response:

Sorry to hear that you are not doing well…here are some suggestions and info that you should consider and discuss with your own doctor, since he knows you best. 1. If the Vioxx isn’t working, then stop it. 2. If the Neurontin isn’t working, then increase it.  It is at a minimal dose right now. 3. If MS Contin at 300 mg/day (what is the dosing regimen?) isn’t providing adequate pain relief, then it needs to be increased.  There is NO UPPER LIMIT to MS Contin when it comes to pain relief.  If you are concerned about physical dependence, then forget it…you have been physically dependent on the MS after the first 2 weeks of use.  Addiction is NOT A CONCERN IN YOUR CASE. If you think that it isn’t working for you at its current dose, wait until you stop and you will see that the dose was inadequate for you but not worthless.  Your pain that you will experience is going to be MUCH MORE. 4. If he decides to stop all meds, including MS Contin, make sure that he tapers that down so that you don’t go through withdrawal. 5. Demerol injections work but the drug is dirty.  There are one particular metabolite that can build up and cause lots of problems, e.g., seizures. There is a movement to get Demerol off the market along with propoxyphene, since there are problems with continued administration of the drug. 6. Oral Demerol has an incredibly low bioavailability and may be related to the "first pass" seen with oral drugs.  "First pass" refers to what happens with everything that is absorbed through your gut.  It must go through the liver first and if the liver is especially efficient at metabolizing the drug, then the serum concentrations suck and you have to take an enormous amount to work.  I have been told (not on great authority) that the conversion factor for IV/IM dose to oral dose is 1 mg = 50 mg.  That is a significant loss in effectiveness. 7. Finally, why aren’t you on breakthrough meds, e.g., MS IR?  That is the proper way first to titrate your dose to proper pain relief, secondly, once titrated to the dose, you need something for the times that the pain gets bad due to overexertion, etc. If your doc is an FP, have him read the guidelines for proper pain management with the AMA/WHO.  They explain how to do this.  It ain’t rocket science. — Bill Work

Response:

Excellent suggestions, Ruada.  I also like your analogies to HTN, infections, etc.  I will remember to use those when I attempt to teach residents about the proper use of pain meds. — Bill Work

– Hide quoted text — Show quoted text – Demerol is a nasty drug when used chronicly.  It is far harder for the body to metabolize and leaves ucky stuff behind that can cause problems (I’m sure either Dr. Work or Dave will help me out here and use the more technical terms to describe what this is — I don’t know the tech stuff — I do know what it does though).  It is not more *addictive* than the others, just far harder on your body and a very bad choice for chronic pain. That what you are currently taking is not helping is absolutely no reason to leave you high and dry with nothing.  If I were you I would remind the doctor that suggested this of the idea that it would be breaking his oath or vow to help if this is done.   Rather like telling a seizure patient that since Dilantin does not control all of the seizures that they will just have to have seizures.  Or someone with an infection that is resistant to penicillin that they cannot use erythromyacin or Keflex.  Or someone with high blood pressure that the first medicine tried does not reduce the elevated blood pressure that they will just have to have high blood pressure and have a stroke.  Perhaps if you put it that way he will understand what he is actually suggesting? There are other choices — several of them.  If MS Contin is the only one they have tried and the "amount of pain relief between the starting dosage of 60 mgs/day to 300mgs/day is barely noticeable" it is probably time to try one of the others.  Antiimflamitories may help if the problems are "mechanical".  Much of the pain with arthritis is "mechanical" too, and they are usually very important in treating that.  They do help me with that pain — they just make me vomit blood very very quickly — I really wish I could take them.  And yes, even the new Cox II ones do this — Vioxx, in 9 days, left me with the first ulcer in 10 years, confirmed by an upper GI, but helped a great deal with the pain. — Ruada    I had an appointment with my Family Dr. today and he suggested dropping all the meds because they are not working for me!?  I take 300 mgs MS Contin, 1 mg Clonazepam, 150 mgs Amitriptyline, Vioxx, and 1200 mgs Neurontin.  I don’t know what the f#$k to do.  I apparently have the constitution of a barn yard animal.    On one hand I can see what the doc is saying.  I have severe DDD and multiple disc fragments free floating in my spinal canal and also have a couple that are trapped.  L4-5 is fused and a grade 2 spondylo. which is getting more painful each day.  I understand that anti inflammatories are not going to provide much relief and the same goes for the Neurontin because my back problems are very mechanically related.  If I don’t move I don’t hurt, however sitting and breathing are included in the movement reference. I don’t want to raise the amount of MS Contin because the difference in the amount of pain relief between the starting dosage of 60 mgs/day to 300 mgs/day is barely noticeable.  I also am not getting any relief from spasms while using the Clonazepam.  Amitriptyline is the only drug that is doing it’s intended purpose which is as a sleep aid.    Now on this hand, it is not my fault that the DR’s haven’t discovered the right drug combination that is going to work.  This is not any justification to drop all meds and leave me high and dry and alone, in pain without any new drugs to try.  I have told the pain clinic Drs and my family Dr that Demerol was the only med that provided me with any relief.  I get no feed back from them and am wondering why?  Is Demerol more liable to make a person more physically dependant than the MS Contin?  What’s the secret being kept from me? When I did get treatment with Demerol it was injected and I would like to know if their is a difference in the efficacy of the drug when taken orally as opposed to  the injected form?  I need help, advice, info, anything that may have worked for some of you! TIA   Sincerely Rob Hartley

Response:

Why do I only see Ruada’s notes when quoted in others’ notes?  I don’t have her killfiled!!!  Any ideas? Rae – Hide quoted text — Show quoted text – Excellent suggestions, Ruada.  I also like your analogies to HTN, infections, etc.  I will remember to use those when I attempt to teach residents about the proper use of pain meds. — Bill Work Demerol is a nasty drug when used chronicly.  It is far harder for the body to metabolize and leaves ucky stuff behind that can cause problems (I’m sure either Dr. Work or Dave will help me out here and use the more technical terms to describe what this is — I don’t know the tech stuff — I do know what it does though).  It is not more *addictive* than the others, just far harder on your body and a very bad choice for chronic pain. That what you are currently taking is not helping is absolutely no reason to leave you high and dry with nothing.  If I were you I would remind the doctor that suggested this of the idea that it would be breaking his oath or vow to help if this is done.   Rather like telling a seizure patient that since Dilantin does not control all of the seizures that they will just have to have seizures.  Or someone with an infection that is resistant to penicillin that they cannot use erythromyacin or Keflex.  Or someone with high blood pressure that the first medicine tried does not reduce the elevated blood pressure that they will just have to have high blood pressure and have a stroke.  Perhaps if you put it that way he will understand what he is actually suggesting? There are other choices — several of them.  If MS Contin is the only one they have tried and the "amount of pain relief between the starting dosage of 60 mgs/day to 300mgs/day is barely noticeable" it is probably time to try one of the others.  Antiimflamitories may help if the problems are "mechanical".  Much of the pain with arthritis is "mechanical" too, and they are usually very important in treating that.  They do help me with that pain — they just make me vomit blood very very quickly — I really wish I could take them.  And yes, even the new Cox II ones do this — Vioxx, in 9 days, left me with the first ulcer in 10 years, confirmed by an upper GI, but helped a great deal with the pain. — Ruada    I had an appointment with my Family Dr. today and he suggested dropping all the meds because they are not working for me!?  I take 300 mgs MS Contin, 1 mg Clonazepam, 150 mgs Amitriptyline, Vioxx, and 1200 mgs Neurontin.  I don’t know what the f#$k to do.  I apparently have the constitution of a barn yard animal.    On one hand I can see what the doc is saying.  I have severe DDD and multiple disc fragments free floating in my spinal canal and also have a couple that are trapped.  L4-5 is fused and a grade 2 spondylo. which is getting more painful each day.  I understand that anti inflammatories are not going to provide much relief and the same goes for the Neurontin because my back problems are very mechanically related.  If I don’t move I don’t hurt, however sitting and breathing are included in the movement reference. I don’t want to raise the amount of MS Contin because the difference in the amount of pain relief between the starting dosage of 60 mgs/day to 300 mgs/day is barely noticeable.  I also am not getting any relief from spasms while using the Clonazepam.  Amitriptyline is the only drug that is doing it’s intended purpose which is as a sleep aid.    Now on this hand, it is not my fault that the DR’s haven’t discovered the right drug combination that is going to work.  This is not any justification to drop all meds and leave me high and dry and alone, in pain without any new drugs to try.  I have told the pain clinic Drs and my family Dr that Demerol was the only med that provided me with any relief.  I get no feed back from them and am wondering why?  Is Demerol more liable to make a person more physically dependant than the MS Contin?  What’s the secret being kept from me? When I did get treatment with Demerol it was injected and I would like to know if their is a difference in the efficacy of the drug when taken orally as opposed to  the injected form?  I need help, advice, info, anything that may have worked for some of you! TIA   Sincerely Rob Hartley

Response:

Sorry Ruada…..for some reason I had "idonotthinkso…yadayada" killfiled. Oops. You’ve been resurrected. Rae

– Hide quoted text — Show quoted text – Why do I only see Ruada’s notes when quoted in others’ notes?  I don’t have her killfiled!!!  Any ideas? Rae Excellent suggestions, Ruada.  I also like your analogies to HTN, infections, etc.  I will remember to use those when I attempt to teach residents about the proper use of pain meds. — Bill Work Demerol is a nasty drug when used chronicly.  It is far harder for the body to metabolize and leaves ucky stuff behind that can cause problems (I’m sure either Dr. Work or Dave will help me out here and use the more technical terms to describe what this is — I don’t know the tech stuff — I do know what it does though).  It is not more *addictive* than the others, just far harder on your body and a very bad choice for chronic pain. That what you are currently taking is not helping is absolutely no reason to leave you high and dry with nothing.  If I were you I would remind the doctor that suggested this of the idea that it would be breaking his oath or vow to help if this is done.   Rather like telling a seizure patient that since Dilantin does not control all of the seizures that they will just have to have seizures.  Or someone with an infection that is resistant to penicillin that they cannot use erythromyacin or Keflex.  Or someone with high blood pressure that the first medicine tried does not reduce the elevated blood pressure that they will just have to have high blood pressure and have a stroke.  Perhaps if you put it that way he will understand what he is actually suggesting? There are other choices — several of them.  If MS Contin is the only one they have tried and the "amount of pain relief between the starting dosage of 60 mgs/day to 300mgs/day is barely noticeable" it is probably time to try one of the others.  Antiimflamitories may help if the problems are "mechanical".  Much of the pain with arthritis is "mechanical" too, and they are usually very important in treating that.  They do help me with that pain — they just make me vomit blood very very quickly — I really wish I could take them.  And yes, even the new Cox II ones do this — Vioxx, in 9 days, left me with the first ulcer in 10 years, confirmed by an upper GI, but helped a great deal with the pain. — Ruada    I had an appointment with my Family Dr. today and he suggested dropping all the meds because they are not working for me!?  I take 300 mgs MS Contin, 1 mg Clonazepam, 150 mgs Amitriptyline, Vioxx, and 1200 mgs Neurontin.  I don’t know what the f#$k to do.  I apparently have the constitution of a barn yard animal.    On one hand I can see what the doc is saying.  I have severe DDD and multiple disc fragments free floating in my spinal canal and also have a couple that are trapped.  L4-5 is fused and a grade 2 spondylo. which is getting more painful each day.  I understand that anti inflammatories are not going to provide much relief and the same goes for the Neurontin because my back problems are very mechanically related.  If I don’t move I don’t hurt, however sitting and breathing are included in the movement reference. I don’t want to raise the amount of MS Contin because the difference in the amount of pain relief between the starting dosage of 60 mgs/day to 300 mgs/day is barely noticeable.  I also am not getting any relief from spasms while using the Clonazepam.  Amitriptyline is the only drug that is doing it’s intended purpose which is as a sleep aid.    Now on this hand, it is not my fault that the DR’s haven’t discovered the right drug combination that is going to work.  This is not any justification to drop all meds and leave me high and dry and alone, in pain without any new drugs to try.  I have told the pain clinic Drs and my family Dr that Demerol was the only med that provided me with any relief.  I get no feed back from them and am wondering why?  Is Demerol more liable to make a person more physically dependant than the MS Contin?  What’s the secret being kept from me? When I did get treatment with Demerol it was injected and I would like to know if their is a difference in the efficacy of the drug when taken orally as opposed to  the injected form?  I need help, advice, info, anything that may have worked for some of you! TIA   Sincerely Rob Hartley

Response:

Probably from back when we had the cotse troll problem.  Someone else used a variation of that to help the troll along? — Ruada

Sorry Ruada…..for some reason I had "idonotthinkso…yadayada" killfiled. Oops. You’ve been resurrected. Rae Why do I only see Ruada’s notes when quoted in others’ notes? I don’t have her killfiled!!!  Any ideas? Rae

<snip

Response:

Question:

any insights or experiences on quitting alcohol, as a manic, would be appreciated.  i have been with AA on and off for twenty years with brief success, and am really turned off with it. i feel like i’m dying, and can’t get suicidal thoughts out of my head. Am on 1200 mgs tegretol, which appeared to benefit but now i don’t feel its working. only brief relief is bourbon. i do have appt: with pdoc on 16th. sometimes i don’t feel i’ll make it that long.                          

Response:

- Hide quoted text — Show quoted text – Path: news.cybercomm.net!uunet!in2.uu.net!152.163.170.17!newstf01.news.aol.com!au drey01.news.aol.com!not-for-mail Newsgroups: alt.support.depression.manic Organization: AOL http://www.aol.com Lines: 11 NNTP-Posting-Host: ladder01.news.aol.com I too have been in and out of AA and NA. I don’t go anymore. Don’t have the time. The support I need is with my bi-polar. I drank to relieve my systems that I now understand were my bipolar. Doesn’t matter why I drank because once I did, I couldn’t stop. As long as I don’t drink and take my meds, I seem to be OK. Actually I am doing well. Ever so often I get a prescrition of narcotics and tend to abuse them, but that is the worst it gets for me. Does screw me up for a while. I would love to coorspond. Peace, Melody

I just want to give you an address so you can order a book called THE FINAL FIX by Jack Trimpey.  If you are anything like me, you don’t want to get sucked back into 12 steppism, but you do want to remain free of chemical dependency just the same.  I won’t go into detail as I am getting ready to sleep.    LOTUS PRESS  PO BOX 800  LOTUS, CA 95651 You can order the book through the mail – I am not sure if it is out in the bookstores.    For whatever it is worth…                                                       Mike

Response:

I too have been in and out of AA and NA. I don’t go anymore. Don’t have the time. The support I need is with my bi-polar. I drank to relieve my systems that I now understand were my bipolar. Doesn’t matter why I drank because once I did, I couldn’t stop. As long as I don’t drink and take my meds, I seem to be OK. Actually I am doing well. Ever so often I get a prescrition of narcotics and tend to abuse them, but that is the worst it gets for me. Does screw me up for a while. I would love to coorspond. Peace, Melody

Response:

Hi Moonclimb Sorry to hear things are bad at the moment. For what it’s worth, I’m bipolar and a recovering alcoholic as well as 18 years of drug addiction on top! I got off the ’substances’ nearly 4 years ago through NA (Narcotics Anonymous). I have been to a few AA meetings and I find them a bit old and religious for my liking. NA seems more friendly, but the programme is essentially the same. I have found it has made a huge difference to my MD. Although I am on fairly heavyweight medication, (Lithium, Tegretol, Sertraline, Zoloft) I don’t have many side effects and work quite successfully, although freelance from home. As far as I know, Tegretol is a drug for epilepsy which has secondary characteristic of being anti-manic. It sounds like you need for your depression to be treated. If you can keep going to meetings, even if they are annoying, and keep off the booze, it certainly helps – at least it did in my case. But get to a hospital or a doctor and get the depression treated right away. Hang on in there mate. Don’t give up now. If you want to talk, email me. All the best, Morgan. – Hide quoted text — Show quoted text – any insights or experiences on quitting alcohol, as a manic, would be appreciated.  i have been with AA on and off for twenty years with brief success, and am really turned off with it. i feel like i’m dying, and can’t get suicidal thoughts out of my head. Am on 1200 mgs tegretol, which appeared to benefit but now i don’t feel its working. only brief relief is bourbon. i do have appt: with pdoc on 16th. sometimes i don’t feel i’ll make it that long.                          

Response:

Call your pdoc now, tell him it’s an emergency.  It is important that speak with him now.  It sounds like you either need an antidepressant or a better one.  There is also a stop drinking herbal drop that you can get in herbal/naturopath stores or offices.  Maybe even try a health food store.  Hang in there.  Please right back so that I know your doing okay.  I’ve been in your spot to a lesser degree.  The right anti-depressants made it so that I didn’t even feel like drinking. Unfortunately I’m of those for now.  I’ve resorted to natural growing drugs for the time being.  I’m sure that they aren’t any better, but they are non-addictive and I’m alive and at peace.   Until you talk to your pdoc, drink warm milk and Chamomile tea.  Either is quite relaxing.  The lactated calcium in warm milk has a relaxing effect.  If you drink to much it’ll put you to sleep.  My pdoc told me about it.  It really helps. Hang in there. They’ll get you feeling better soon. Julie – Hide quoted text — Show quoted text – Newgroups: alt.support.depression.manic any insights or experiences on quitting alcohol, as a manic, would be appreciated.  i have been with AA on and off for twenty years with brief success, and am really turned off with it. i feel like i’m dying, and can’t get suicidal thoughts out of my head. Am on 1200 mgs tegretol, which appeared to benefit but now i don’t feel its working. only brief relief is bourbon. i do have appt: with pdoc on 16th. sometimes i don’t feel i’ll make it that long.                          

Response:

Question:

Many people on lithium stabilize at a level of mild depression. That is why an antidepressant is usually added. Wellbutrin and Effexor seem to be the safest. Also consider adding Neurontin or Lamactil. If your doctor won’t consider these changes, find another doctor! Keith, not licensed to practice medicine in your state, but I work cheap.

Response:

Hi Cindy- I don’t remember how long you have been on lithium.  Sometimes the side effect decrease as you go on.  There are also other mood stabilzers you can try.  I’ve never been on lithium, but it looks too nasty to contemplate.  You can call the pdoc – just because it’s been rx’d doesn’t mean you have to keep going with it if it makes your life more miserable than the drug is worth. Kimberly, off Depakote (old pdoc knows this) and waiting for the new pdoc to get back from her vacation…

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Cindy, For me – Effexor has been a blessing. I’ve been on most anti-depressants wo much relief over the last 8 yrs: Prozac, Serazone, Wellbutrin, Trazadone.  I noticed almost an immediate result with Effexor – it did not take the 4-8 weeks the other SSRIs take to "work". Effexor is known as a second line anti-depressant, when folks don’t respond to the first line (Prozac, Zoloft, Paxil, Wellbutrin).  Didn’t gain any weight on Effexor – noticed an increase in energy. Side effects – (common to must antidepressants) – headaches, constipation, dry mouth, excessive thirst and increase blood pressure. All of these symptoms seemed to subside dramatically after my body adjusted to the medication. Each time we increase the dose – get some of the symptoms – but not as bad, Also – I am on my 3rd week of Lamictol as my mood stabilizer. It is replacing Depakote. I am noticing my moods are much more stable (but – ugh – and having to look at the mess my life is in) and am enjoying the anti-depressant attributes of Lamictol. Ki – Hide quoted text — Show quoted text – Is effexor really better?  I’ll tell ya what I don’t want.  Headache, decrease in libido or wieght gain.  I know of another man who is on effexor and swears by it.  Said it is the drug that put him where he wants to be. He looks wonderful and has been on it for 2 years.  He said I will know when I find the right antidepressant. — Cindy Cindy, The Wellbutrin can cause horrible side effects, like headache and irritability. You might want to ask about Effexor instead. Lithium is a bitch. I haven’t been able to eat corn since I started it! I quit drinking sodas and my diarhea improved a lot. Immodium helps. You have made so much progress in such a short time! You may very well want to try another medicine. But don’t go off that lithium until your doctor says so. Look at some of your old posts. You can find them all on Deja News. Stay alive Cindy! Keith

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Many people on lithium stabilize at a level of mild depression. That is why an antidepressant is usually added. Wellbutrin and Effexor seem to be the safest. Also consider adding Neurontin or Lamactil. If your doctor won’t consider these changes, find another doctor! Keith, not licensed to practice medicine in your state, but I work cheap.

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Cindy, I am new here, but I read your message and could not help responding….I am on Lithium too and have been on and off for about a year.  I am 30 years old and have become very apathetic, regardless of Zoloft everyday.  I have a new job and a new house, and I just dont care…Its like I will never experience pleasure again…my doc says these are normal moods, but i feel like a robot…i tried to come off my meds over the weekend and ended up suicidal and laughing and crying at the same time…since back on i feel much better….i always think that i can come off…but in the end, i know that i cannot….and be halfway normal in the life….please write

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Feeling awful.  On lithium 900mg and wellbutrin 75mg 3 times a day. Headache, nausea, tinnitis. Moving to a big beautiful house… and dammit… dont give a damn. I am so tempted to wean myself off these meds.  From experience I know I can’t suddenly stop them.  I know I know… just a day or so ago I was complaining about the lithium dosage and said everything was fine.. Well it really isnt. And it seems to be getting a lil worse each day.  Damn meds. Cindy Hi Cindy

 Ohhhhhhh   I still know what you mean. All thru high school, my nausea was even more provoked by my irritable bowel..and to this day i still have the old porecielan worship going on. I’m up to 1200 mgs.Lithium…wish I hadn’t stopped p-doccing because of the mom..the GP upped it, and yes, i think it’s beyond therapuetic..it’s menacing.. besides the point….. Remember one thing for me..like i wish my mom would believe… When you say something like "I am okay" esp when it pertains to your BP, remember moods fluctuate, and what was once true for today..may be a lot different tomorrow. One day at a time, one night at a time..I’m here for ya always. ;oP ((((((((((hugs and i will that nausea to go away!)))))))) ps, try this excerise: dark room…close eyes, imagine the number 7 in your head. count down to 1 in your head, visualising each number as it goes down. Then link each # with a color, purp. for 7, blue for 6, down to the red 1. Now picture yourself lying in a cool pool of water, and throwing your leaves of worry and nausea and such away..try to ‘toss" the leaves into the air. Melanie..that lil’ girl who’s got one eye to her man, and the other in her songbook

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Cindy, The Wellbutrin can cause horrible side effects, like headache and irritability. You might want to ask about Effexor instead. Lithium is a bitch. I haven’t been able to eat corn since I started it! I quit drinking sodas and my diarhea improved a lot. Immodium helps. You have made so much progress in such a short time! You may very well want to try another medicine. But don’t go off that lithium until your doctor says so. Look at some of your old posts. You can find them all on Deja News. Stay alive Cindy! Keith

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CINDY,I AM A MANIC DEPRESSENT FOR 3YEAR’S NOW IS THERE ANY CHAT ROOM ON INERRNET OR SOME ONE I CAN TALK TO I AM ON DEPEKOTE 500MLGS 3 TIMES ADAY AND LUVOX 200MLG ONCE A DAY I FELL LIKE SHIT ALL THE TIME I WANT MY DOC TO PUT ME ON LITHIUM IS IT WORKING FOR YOU AND DO YOU GET ANY SIDE AFFECT’S THANX’S HOPE

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Is effexor really better?  I’ll tell ya what I don’t want.  Headache, decrease in libido or wieght gain.  I know of another man who is on effexor and swears by it.  Said it is the drug that put him where he wants to be. He looks wonderful and has been on it for 2 years.  He said I will know when I find the right antidepressant. — Cindy

– Hide quoted text — Show quoted text -Cindy, The Wellbutrin can cause horrible side effects, like headache and irritability. You might want to ask about Effexor instead. Lithium is a bitch. I haven’t been able to eat corn since I started it! I quit drinking sodas and my diarhea improved a lot. Immodium helps. You have made so much progress in such a short time! You may very well want to try another medicine. But don’t go off that lithium until your doctor says so. Look at some of your old posts. You can find them all on Deja News. Stay alive Cindy! Keith

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<Posted and Mailed to Cindy Is Effexor really better?

The effectiveness of EVERY psychoaffective med will vary significantly depending upon individual differences. All we can really say is that a particular med: worked, didn’t work, or sorta worked for us. YBMV — and probably will! Having said that, Effexor (and Remeron) may be effective for you IF your system is deficient in norepinephrine (an essential neurotransmitter). It also reputedly increases serotonin. But I suspect that you have already tried many SSRI antidepressants without much success. Wellbutrin uniquely addresses insufficiency in a person’s dopamine level. Effexor has proven to be very effective for me. That’s as much as I can say about it that would have any relevance to your situation. I’ll tell ya what I don’t want.  Headache, decrease in libido, or weight gain.

Unfortunately ALL of the above are frequent adverse side effects of many of the meds that mess with our brains. I know of another man who is on Effexor and swears by it.  Said it is the drug that put him where he wants to be. He looks wonderful and has been on it for 2 years.  He said I will know when I find the right antidepressant.

You have utilized the correct word "find". A search (experimentation) is currently the ONLY way to discover which med(s) will prove effective for your brain. Cindy, welcome to the BP Lab Rat Club! Please try to have Patience and Persistence. Wishing you all the very best from, James — Chief Rat

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Feeling awful.  On lithium 900mg and wellbutrin 75mg 3 times a day. Headache, nausea, tinnitis. Moving to a big beautiful house… and dammit… dont give a damn.  I am so tempted to wean myself off these meds.  From experience I know I can’t suddenly stop them.  I know I know… just a day or so ago I was complaining about the lithium dosage and said everything was fine.. Well it really isnt. And it seems to be getting a lil worse each day.  Damn meds. — Cindy

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Feeling awful.  On lithium 900mg and wellbutrin 75mg 3 times a day. Headache, nausea, tinnitis. Moving to a big beautiful house… and dammit… dont give a damn.  I am so tempted to wean myself off these meds.  From experience I know I can’t suddenly stop them.  I know I know… just a day or so ago I was complaining about the lithium dosage and said everything was fine.. Well it really isnt. And it seems to be getting a lil worse each day.  Damn meds. — Cindy

I don’t blame you for wanting to get off Lithium.  Get off it girl!  Call your doctor tomorrow and let him know you are not going to take one more pill (AND DON’T).   If he’s any good, he will find you an alternative immediately.  If not, get a temporary remedy in the ER until you can get a new doc. I have known people to say that Benadryl works as an anti-manic for the short term and is available over-the-counter, and  can be researched  on the internet regarding  dose to take for anti-manic effect.  It is used clinically in much higher doses for b/p in perscription dose, but I don’t know what it is, and I guess I have to say that I caution you in trying to figure out a home remedy as it could cause problems and be dangerous.  Nevertheless, if you’ve had b/p for awhile, you, like many, have probably figured out how to handle some med glitches on your own. I think the best hope is that you are started on something new in the am… post phone-call. Good luck!

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can someone tell me what the twitches are about?  i gave up the zoloft to get rid of them (thought they were a serotonergic effect) but they are there still, my limbs and, just today, my face.  I’m not talking about fine tremors but bloody great jerks.  whats causing them?  the lithium (850daily) or the tegretolCR(1600daily)?  this is one of the reasons i am going to quit – can’t stand it, feel out of control.  i have looked through med sites but want to know if anyone has experienced this and what they did?  Please help.  really can’t take much more of anything.

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Washington — One side effect of tegretol are myoclonic  jerks (muscle jerks).  I have them at any dose above 1200 mgs.  My arm leaps up like I’m waving goodbye to someone, and I’ve dropped things I was carrying etc.  My limbs also twitch in sleep from Tegretol. Shikaku – Hide quoted text — Show quoted text – can someone tell me what the twitches are about?  i gave up the zoloft to get rid of them (thought they were a serotonergic effect) but they are there still, my limbs and, just today, my face.  I’m not talking about fine tremors but bloody great jerks.  whats causing them?  the lithium (850daily) or the tegretolCR(1600daily)?  this is one of the reasons i am going to quit – can’t stand it, feel out of control.  i have looked through med sites but want to know if anyone has experienced this and what they did?  Please help.  really can’t take much more of anything.

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<Posted and Mailed to Washington and Shikaku – Hide quoted text — Show quoted text – Washington — One side effect of Tegretol are myoclonic jerks (muscle jerks).  I have them at any dose above 1200 mgs.  My arm leaps up like I’m waving goodbye to someone, and I’ve dropped things I was carrying, etc.  My limbs also twitch in sleep from Tegretol. Shikaku can someone tell me what the twitches are about?  i gave up the Zoloft to get rid of them (thought they were a serotonergic effect) but they are there still, my limbs and, just today, my face.  I’m not talking about fine tremors but bloody great jerks.  what’s causing them?  the lithium (850daily) or the Tegretol (1600daily)?  this is one of the reasons i am going to quit – can’t stand it, feel out of control.  i have looked through med sites but want to know if anyone has experienced this and what they did?  Please help.  really can’t take much more of anything.

I have a couple of suggestions for you to consider: (1) Try Klonopin (clonazepam). It knocks up 99+% of my muscular spasms.     This is called myoclonus. While asleep I used to have severe PLMS     (Periodic Limb Movements in Sleep). A Sleep Study revealed that I had     324 muscular spasms during 5 hours of sleep. These twitches were     rousing me from Level 4 deep sleep. It is essential for everyone to     get a sufficient amount of Level 4 sleep in order to feel well     mentally and physically. Klonopin is supposedly non-addictive below     1.5 mg per day. BTW if I forget a dose, I have no addictive cravings     for Klonopin (or any of the other psychoaffective meds that I take). (2) Try another mood stabilizer. There are currently new meds in use for     the treatment of BP with less severe adverse side effects. Please see     below for further information. FAQ: "Mood Stabilizers Being Used in the Treatment of BP Disorder" By James D. Milton See below for 7 meds that are currently being used as mood stabilizers. I post FAQs about some of the newer ones bimonthly. I have not attempted to list adverse side effects because they vary considerably from person to person. You will just have to keep on trying until you find one (or more) that prove effective for you with side effects that you can tolerate. You can find out a lot about the treatment of bipolar disorder by visiting this Web site: http://www.psycom.net/depression.central.drugs.html At the above Web site there are many links to other informative sites. Knowledge, Patience, and Persistence IMO are vital keys to success over our common illness. I wish you well! Best regards from, James                 Information Regarding BP Mood Stabilizers 1. Lithium carbonate — Lithobid (and other time release formulations) 2. Divalproex sodium — Depakote, Depakene, Epival 3. Carbamazepine     — Tegretol, Epital 4. Gabapentin        – Neurontin 5. Lamotrigine       — Lamictal 6. Topiramate        – Topamax 7. Verapamil         — Isoptin Combining two (or more) mood stabilizers may be more effective than when each is taken alone. One med may "potentiate" the effectiveness of another — so that the whole effect becomes greater than the sum of its individual contributors. A subtherapeutic dose of lithium carbonate may aid in mood stabilization when coupled with another mood stabilizer. It is important to realize that each of us has very individualistic reactions to ALL psychoaffective meds. YBMV (Your Brain May Vary) — and likely will. What is a blessing for one person may prove to be a curse for another and ineffective for a third. We are moving targets that are very difficult to hit. With some people their brain neurochemistry apparently changes from time to time — thus necessitating further changes in the dosage and composition of their psychoaffective medications. Also there are many antidepressant, antianxiety, antimania, antiseizure, and antipsychotic meds that may be very useful adjuncts to mood stabilizers in the treatment of a BP condition. Where available I highly recommend the time release formulation of any psychoaffective med. If such is currently unavailable or is too expensive, smaller dosages taken more frequently (4 times daily in equal amounts) may well enhance mood stabilization and potentially lessen any adverse side effects. Any and all med or dosage changes should be first thoroughly discussed with your pdoc or psychopharmacologist. Some people apparently seem to think I come across like a medical professional. I would once again like to emphasize that I am NOT! I am just a person that has had a bipolar (manic-depressive) condition for many years. However I do attempt to keep up with meds that might prove potentially beneficial in the treatment of BP. Also I have personally experienced the importance of taking lesser dosages more frequently. This IMO is unfortunately greatly under appreciated by many health care professionals.

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Question:

Wanda,  I have had three colonoscopys and none of them were bad experiencees. The doctor ran an I.V. in me so I was sleepy  hopefully your doctor can do the same.  Maybe you could ask.  I would not be too worried.  Kim

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I totally agree with Steve. You shouldn’t feel a thing – and the phoso-soda is much better than anything else.  Relax – but be sure you tell your doctors and your nurses how nervous you are – I think you get better care if you are honest. You will do fine!! Rebecca – Hide quoted text — Show quoted text – I have had 2 colonoscopies with very different results.  The first was without anesthia…..never again.  The second time was a breeze and I slept like a baby.  Also, the first was with golytley which was a nightmare…made me sick. The second was with phos-soda which was much better.  Insist on phos-soda and being put to sleep and it is not so bad…best wishes! Steve

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Hi Scott!      Sorry you have to have a colonoscopy, but I agree with the other messages, they’re really not all that bad.  Even when there are areas that may be narrowed and difficult to access, it only hurts for a short time.  Generally speaking, most drs use some sedation in combination with an amnesiac (like Versid), so you will be relaxed enough, yet alert enough to follow their instructions.  They may ask you to move around a bit to assist them in advancing the scope to visualize certain areas.  The Versid will effectively wipe out all memory of the procedure and afterwards you may well think you actually slept through the whole thing!      My veins are impossible after 30 years of prednisone, so for me, the worst part of the procedure is attempting to start an IV for the medication.  I’ve had more colonoscopies than I can count, most with very little or no sedation. We didn’t even TRY starting an IV for the last one.  Think much of the trauma of the procedure is the anticipation of possible pain, fear of the possible physical findings, and apprehension of the unknown.  You know, being afraid because you don’t know what to expect.  After having so many myself, most of those fears are no longer a factor.      Having said all of that, must admit that I actually slapped the doctor at one point during my last colonoscopy!  Quite a feat in itself when you consider the positioning.  However, he would not stop momentarily for me to catch my breath.  Smooth sailing after we got that worked out…  One benefit of no sedation was that I was able to hop off the table and walk out of the room immediately after.  Was anxious to get outside for a cigarette!  Generally more soothing for me than a sedative.      Incidentally, the reason I slapped the doctor was due to the increased pain when he was advancing the scope through a particularly nasty old surgical site, which he was attempting to dilate with an expandable balloon.  This procedure, therefore, eventually left me feeling better than before!  Did have a bit of nasty cramping for the remainder of the day, but was worth it! Besides, found it quite entertaining and interesting to watch the whole thing on the little TV.  Just remember, if it DOES hurt at any point, it won’t last long! Good luck! Debbie

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- Hide quoted text — Show quoted text – I have to call my GI Specialist on Monday to book a full colonoscopy.  I am scared to death. Can someone tell me EXACTLY what happens, how it feels, and a little of support could help me too.  My bowels are bad enough, whenever I think of this I get the shits. Help. Wanda I had the tube inserted in the first six inches of my rectum about a year ago, it hurt!   I was diagnosed with proctative colitis (sp)  My family physician thinks its moved up higher and now its ulcerative colitis.  She wants the full colonoscopy to confirm…….:( I am on Asacol – 1200 mgs three times per day.  I am finally starting to lead a pretty well normal life.  I use to insert enemas when I had a flare up but there are no good at all anymore. Thanks.

  I have had 3 colonoscopies. they are not that bad. The worst is the prep before had making sure that everything inside is completely clean.  My butt was so sore from sitting on the can. The colonoscopy itself wasn’t that bad. I was given a couple shots of demeral. In my case the demeral reduced the pain but I was conscious for the procedure. I was able to watch a TV monitor and see my insides as the scope made its way through my colon. I thought this was rather kewl.  At times there was some pain as the scope went around a corner but it was liveable. Just take some deep breaths.  I hope everything goes well for you. Let us know after. Wayne

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I have had 2 colonoscopies with very different results.  The first was without anesthia…..never again.  The second time was a breeze and I slept like a baby.  Also, the first was with golytley which was a nightmare…made me sick. The second was with phos-soda which was much better.  Insist on phos-soda and being put to sleep and it is not so bad…best wishes! Steve

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I think everyone has said it …. the prep is really the worst part of it …. and that only means feeling like vomiting …. okay .. i know its a really unpleasant vomiting feeling … but its only for the part of the day leading up to the procedure! I’ve had 2 colonscopies … about 2 years apart. For the first one, i was pretty sedated, only had one occasion when it did hurt …. a short period of pain, but the pain passed, and the procedure continued. Like i say i was pretty much knocked out for this one, although i was aware of some things going on around me. The second, was slightly different. My consultant (who i see for the Crohns) perfromed this one. He’s a terrific guy … lives and breathes his job i think! …. but when the nurse told me that he prefers his patients to be "more responsive and awake during the procedure" i nearly had a panick attack!!!. She said that he doesn’t give as much sedation as the others normally do, because he’ll ask the patient to lie swap from lying on their side to their back and back again to try and get a good view of whats going on in the bowel. Anyways …. despite my fears …. it was really no different than the first one …. i was much more aware thats for sure ….. he had me move from one side to another a couple of times ….. i also had some slightly painful uncomfortable moments …. but as previuosly, they pass fairly quicky. All in all ….. don’t worry about it …. tell them what your concerns are …. tell them your shit scared if you are!! ….. they’re normally a compassionate bunch of people who do this job ….. so let them know how your feeling. One thing that happened to me, which i hope doesn’t happen to you is this ……. you discover one of the nurses helping with the procedure is a girl you usd to go to school with!! *LL* ……. this was emabarrasing!! *LL* ….. just the type of situatuion you want to meet an old school freind from 10 years back!! *LL* One more thing ……. the best part of the whole procedure is waking up to a good cup of tea and some toast ….. it makes it all worth while!! *SS* Don’t worry and relax …… its only about 10% as badd as you think its gonna be. Kev – Hide quoted text — Show quoted text – I have to call my GI Specialist on Monday to book a full colonoscopy.  I am scared to death. Can someone tell me EXACTLY what happens, how it feels, and a little of support could help me too.  My bowels are bad enough, whenever I think of this I get the shits. Help. Wanda I had the tube inserted in the first six inches of my rectum about a year ago, it hurt!   I was diagnosed with proctative colitis (sp)  My family physician thinks its moved up higher and now its ulcerative colitis.  She wants the full colonoscopy to confirm…….:( I am on Asacol – 1200 mgs three times per day.  I am finally starting to lead a pretty well normal life.  I use to insert enemas when I had a flare up but there are no good at all anymore. Thanks.

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I have to call my GI Specialist on Monday to book a full colonoscopy.  I am scared to death. Can someone tell me EXACTLY what happens, how it feels, and a little of support could help me too.  My bowels are bad enough, whenever I think of this I get the shits. Help. Wanda I had the tube inserted in the first six inches of my rectum about a year ago, it hurt!   I was diagnosed with proctative colitis (sp)  My family physician thinks its moved up higher and now its ulcerative colitis.  She wants the full colonoscopy to confirm…….:( I am on Asacol – 1200 mgs three times per day.  I am finally starting to lead a pretty well normal life.  I use to insert enemas when I had a flare up but there are no good at all anymore. Thanks.

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A full colonoscopy isn’t too bad at all.  As everyone is going to tell you, the prep is the worst part.  The GI wants the digestive track to be very clean for this, so you’ll be given something to help empty out the bowels. The night before the ’scope, you’ll have to do the prep.  Plan to stay in that night…  after that, it should be much better.  For the scope, you should be given some drugs to put you to sleep and to wipe the memory (Demerol and versed).  When you come to, you probably won’t remember anything about the process, and your memory will be spotty for the rest of the day.  Needless to say, somebody will have to drive you home.  That’s really all there is to it. Good luck. Bob – Hide quoted text — Show quoted text – I have to call my GI Specialist on Monday to book a full colonoscopy.  I am scared to death. Can someone tell me EXACTLY what happens, how it feels, and a little of support could help me too.  My bowels are bad enough, whenever I think of this I get the shits. Help. Wanda I had the tube inserted in the first six inches of my rectum about a year ago, it hurt!   I was diagnosed with proctative colitis (sp)  My family physician thinks its moved up higher and now its ulcerative colitis.  She wants the full colonoscopy to confirm…….:( I am on Asacol – 1200 mgs three times per day.  I am finally starting to lead a pretty well normal life.  I use to insert enemas when I had a flare up but there are no good at all anymore. Thanks.

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Question:

I can’t say anything to make you feel better, I feel the same way, just know you’re not alone. Cathy

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Whether the doctors label it as Crohns or something else, it still is a pain to feel like hell, isn’t it? I wish you  the best of luck on feeling better and getting your life back. I know that when  my doctor diagnosed me with "normal teen-age stress"  instead of Crohn’s, I ended up living  a rather altered life, thinking I was bringing all the hell on myself.             This time now is annoying, but eventually it will get better. I promise.  I know  -=== I have spent about 200 days in the last 3 years in various hospitals, doctor offices, herb stores, massage therapies, etc., etc.  And today, I only feel somewhat al-right, but trying to keep a good attitude does help me.  I know you can make it. Hang in there

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Yeah, it sucks, but it gets better eventually. Chris

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Feel better now?  You scared the daylights out of my Gerbil. Clyde can be very sensitive. Are there any other doctors in the area? Al and his Gerbil, Clyde

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Yes, I know exactly how you feel.  I feel like I have been in my flare up for a year and a half.  I have never had one full good day since then.  I am on Asacol, 1200 mgs 3x/day, so now I use the bathroom 5-6 times a day.  I still don’t feel comfortable going anywhere unless I know exactly where all the washrooms are. I still have alot of abdominal Hang in there, we all know exactly how you feel.  Keep reading the posts on this newsgroup.  I usually feel better when I read them all as it makes me realize there are alot of people out there that know what we are going through.  I don’t know anyone else that has UC so when I come here (everyday) I feel better. Take Care and All the Best. Wanda

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Wow, I have been on medical leave since Feb.  Trying differernt treatmentss,  etc, and not readfy to go back to work,  My RD is so supportive, but I live in  a very small town and on days  when  I feel I can drive and do shopping, I  invaribly run into people   who know me in my  job and since I happen  to be  able to walk that day and push a grocery cart they wonder why  I  am not at  work.  I feel weird, and some guilt, but I know that I can never explain to  them the other days when I cannot walk,  go to the bathroom by myself, and  give my daughter the mothering she needs. Or the care that my husband needs,  That they take care of me, in ways that I would never ask them to if I did not  have this disease.   Thank god that they love me so much and thank you all for  this board.  I could not hack it without.   THANKS

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was "Oh, everybody has arthritis!", then proceeded to tell me that her back was bothering her.  AAARRRRGGHH! Most people hear the word arthritis and think of all those people on TV commercials who are back to normal after popping a couple of pills.  I really hate "minor arthritis pain".  Most people don’t realize that there are many kinds of arthritis snip Anita

- my all time favorite is when i was a teenager with joint replacements in an electric chair in the hospital for month 5iive of PT and a fellow patient or visitor would ask "what is wrong with you dear?", and when i replied arthritis they would say," i know isn’t it awful, the dr said i can’t play golf for three weeks!". i always wanted to say ‘REALLY! I haven’t been able to wipe my ass for three years!" -kathleen

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this post started my dreary day with a chuckle. thanks. it’s funny how we can  be so polite to people who make thoughtless remarks, when we really wanna hit  ’em up side the head with a titanium joint.  la

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Welcome back, drdoc! How was your trip out here to Sunny California? Hope you managed to squeeze in some vacation time, since we’ve had such beautiful weather in the last week or so. Did you learn anything new about arthritis? Evelyn (mother of Elena, who has JRA)

Thanks… I was there attending a cox-2 symposium – centering on celecoxib… Which im currently doing a study on.. It sounds like an advance that will be welcomed by many arthritis patients in the future. Next week i shall be back in the USA again on another conference.. in Washington DC ( The ACR) and … I shall be meeting Dr Susan Hoch there) However – this time it will be a 2 week trip…. so hold those personal emails to me between the 3rd – 16 Nov 1997. After that I will try catch up… Regards drdoc http://www.aztec.co.za/users/drdoc/

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I’ve found treating RA is a "crap shoot". One mix works fine for a while, and then suddenly doesn’t work anymore. And you start hunting for the right combination again.  I know – I’ve had RA for approx. 20 years.  I started taking the antibiotic therapy about a month or so ago, after I got on the internet, and read about it for the first time.  I admit to being somewhat cynical about it, but I was also desperate.  (Never desperate enough to try some of what I call snake oils, though)  It’s working for me – or something is.  Maybe a combination of everything I’m taking is finally kicking in, maybe it’s the power of suggestion, or maybe the RA just quieted down on its’ own for a while.  I don’t care why, it just did.  And do you suppose I’d get attacked if I say the methotrexate quit working for me?  As did gold shots, and most of the NSAIDS.  Ignore the attacks – they have no added value.  Keep the faith, and keep truckin…. SharonH

Great news that the antibiotics work for you.  The theory behind them makes sense, though I don’t think everyone’s arthritis has the same origin. It does make sense, though, that if the cause were related to an immune response to attack that antibiotics would work.  That’s why I hung in there so long with them.  I had a bad case of pneumonia the year before I was diagnosed.  Perhaps the pneumonia was the trigger….oh, I can ramble. Anyway, it would also seem that since you are getting positive results from antibiotics you have closed in on the avenue for treatment.  For some reason, it doesn’t sound like it would lose it’s effectiveness. Hope you are getting out to enjoy the beautiful fall weather.  Feeling good and fresh air go together! Carol                 Human beings are flawed individuals…the cosmic bakers took us out a little too early.  That’s why we’re as crazy as we are—Jimmy Buffett

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Today Elena was in tears. She had planned to do something after school with a friend, but didn’t get to because the mother of her friend wouldn’t give her a ride home from their house. She thought Elena should be able to walk, and that she’s a "nuisance with her arthritis." Poor Elena. All I could tell her is that I’m sorry some people are not nice, and really sorry that a grownup was not nice to her, but that she will run into them from time to time. It’s too bad it’s happening already. Evelyn (mother of Elena, who has JRA)

Thats why you can never have enough education of the public AND the doctors. Many people think its just an mild ache and pain that gets better with herbs and spices. Thinking of you all…. Regards drdoc

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Today Elena was in tears. She had planned to do something after school with a friend, but didn’t get to because the mother of her friend wouldn’t give her a ride home from their house. She thought Elena should be able to walk, and that she’s a "nuisance with her arthritis." Poor Elena. All I could tell her is that I’m sorry some people are not nice, and really sorry that a grownup was not nice to her, but that she will run into them from time to time. It’s too bad it’s happening already. Evelyn (mother of Elena, who has JRA)

That is soooo disgusting, I don’t understand how any "adult" can be that cruel to a child.  She sure has a lot of "growing up" to do.  I hope her daughter has more sense than her mother.  I hope Elena feels better and realizes that there are a lot of selfish idiots in this world.

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It’s sad that you were attacked because you said the antibiotic didn’t work.   If your attackers don’t know it yet, they will eventually – not everything works for everyone all the time.  You know, it’s kind of like you can fool all of the people some of the time, you can fool some of the people all the time, but you can’t fool all the people all the time. Medications work the same way.  I’ve found treating RA is a "crap shoot". One mix works fine for a while, and then suddenly doesn’t work anymore. And you start hunting for the right combination again.  I know – I’ve had RA for approx. 20 years.  I started taking the antibiotic therapy about a month or so ago, after I got on the internet, and read about it for the first time.  I admit to being somewhat cynical about it, but I was also desperate.  (Never desperate enough to try some of what I call snake oils, though)  It’s working for me – or something is.  Maybe a combination of everything I’m taking is finally kicking in, maybe it’s the power of suggestion, or maybe the RA just quieted down on its’ own for a while.  I don’t care why, it just did.  And do you suppose I’d get attacked if I say the methotrexate quit working for me?  As did gold shots, and most of the NSAIDS.  Ignore the attacks – they have no added value.  Keep the faith, and keep truckin…. SharonH – Hide quoted text — Show quoted text – Thanks Ali,  there seems to be a religious zeal concerning antibiotic therapy.  About a year ago, I posted that it did not work for me.  Wow! That really made some people angry, e-mailing me with rants about how I must have done something wrong…that I must have skipped doses or that the dose, itself, must have been off.  Or that I hadn’t been on it long enough.  This is the last place I’d expect to find a "blame the victim" mentality.

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Today Elena was in tears. She had planned to do something after school with a friend, but didn’t get to because the mother of her friend wouldn’t give her a ride home from their house. She thought Elena should be able to walk, and that she’s a "nuisance with her arthritis." Poor Elena. All I could tell her is that I’m sorry some people are not nice, and really sorry that a grownup was not nice to her, but that she will run into them from time to time. It’s too bad it’s happening already.

Hi, Evelyn! I am soooooo sorry to hear that Elena had to have this experience with an adult!!! I guess it only reflects the lack of understanding most of us meet in our daily lifes… Many people don’t have a clue about how much impact joint problems can have on our ability to e.g. walk or do other things. Many times it boils down to wheather or not people _listen_ to what you’re saying and then regard you as the best judge of your abilities. Obviously this woman is one of those people, which makes me agree with you – she isn’t nice!!! PS! Does the AF have any nice brochures telling about the problems JRA sufferers have, describing common difficulties with activities etc? Such brochures could be a nice thing to hand out to friends’ parents etc… Hope you’re doing better after you got "stabbed" the other day!!! — Best regards,                 Visit my homepage: Med vennlig hilsen,          <URL:http://home.newmedia.no/flaker/ _Aase Marit_ ))))))

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Given all this new craze on the board about antibiotic therapy lately, I decided to ask my rheum about how his patients are doing. He says that he has not had all that much success with the therapy and has also found that over half of his patients who have been on the therapy for more than 6 months develop some type of rash, like a bruise in different areas on the body. He has found that this does not go away after therapy is stopped. He does continue to use the therapy with some patients who really want to try it or have tried everything else without success. I guess some of his pts. are successful on it, but the majority of his are not… I have read some of the articles on this therapy and I do think that it probably will begin to get more publicity in the future. I really would like to see some published studies about the negative affects of this med. It seems that there are only research from people who believe in its success. But before any therapy can really be accepted into the medical community, it must be subjected to many studies, looking at both its positive and negative affects, and then the benefits/side effects are weighed.   I apologize if this note begins another huge debate on the board… but I figured that since I asked the rheum, I might as well share with you what his experience has been… —Ali life is what happens when you’re making other plans…

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Personally, I feel that the reason that most people have little real understanding of this disease is the they have simply failed to inform them.

Hi, Skipper! May I extend that one to _these_ diseases? I agree, most people don’t know a thing about the fact that there’s lots of different types of _inflammatory_ arthritis. Most people probably think about OA when they think of arthritis, or the good ol’ rheumatism (whatever that really is) … — Best regards,                 Visit my homepage: Med vennlig hilsen,          <URL:http://home.newmedia.no/flaker/ _Aase Marit_ ))))))

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Today Elena was in tears. She had planned to do something after school with a friend, but didn’t get to because the mother of her friend wouldn’t give her a ride home from their house. She thought Elena should be able to walk, and that she’s a "nuisance with her arthritis." Poor Elena. All I could tell her is that I’m sorry some people are not nice, and really sorry that a grownup was not nice to her, but that she will run into them from time to time. It’s too bad it’s happening already. Evelyn (mother of Elena, who has JRA)

How awful!  It’s bad enough for us adults to deal with stupidity, but it must be awful for a child.  You sound like you handled the situation well.  I’d be inclined to give that person an earful! Anita —

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Today Elena was in tears. She had planned to do something after school with a friend, but didn’t get to because the mother of her friend wouldn’t give her a ride home from their house. She thought Elena should be able to walk, and that she’s a "nuisance with her arthritis." Poor Elena. All I could tell her is that I’m sorry some people are not nice, and really sorry that a grownup was not nice to her, but that she will run into them from time to time. It’s too bad it’s happening already. Evelyn (mother of Elena, who has JRA)

I was so upset to hear of your daughter’s experience. You expect children to be ignorant of situations like this but not their parents. I don’t know how strongly you feel about it but I would clue this woman in so that your daughter will at least know she has been informed and if she acts poorly in the future then it is not ignorance but lack of compassion. You are right to tell her she will find people like this from time to time. Keep up the good work mom. Catherine "And the beat goes on."

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There is one sure thing that I learned from this disease.  The only people who understand what it feels like to have this disease are those afflicted with it.  I’ve stopped trying to explain my pain and frustration with the disease to others.  They don’t care! I truly understand how you feel.  I know it’s hard, but don’t let it get to you.

Please don’t assume everyone doesn’t want to understand.  I have been reading  this group for over a year now since my sister-in-law found it.  She has had  JRA for about 12 years, I think.  I like to think that I am sensitive to what  she has to deal with.  I also have learned some things reading this group –  like how much pain a handshake can cause.  I think she has learned about  things I have dealt with, by me sharing them with her.  Arthritis definitely  is a misunderstood disease among those who don’t have it or haven’t lived with  a person close to them who has it, but I wouldn’t assume it is because no one  cares.  Like someone said, it is associated with older people and there are so  many problems associated with old age that it is overwhelming and hard to  focus on.  When I explain to someone that my sister-in-law has arthritis and  how debilitating it is, they are sympathetic.  When I talk about my  grandfather who has Alzheimers and doesn’t recognize my grandmother much (let  alone me or my mother!), it is a different story.  Right or not, until people  stop associating arthritis with old age, people will likely assume that your  stiffness will go away in a few days and there is little pain.  I, for one,  will always be interested to hear about a new disease and the effects, if  anyone is interested in sharing them.  The more I understand what people are  dealing with, the easier it makes it for me to accept a mean comment, bad  attitide, or the like.  But I still think we all deserve the right to complain  about what we are going through.  You can always find someone who is going  through something worse than you.  Must I always be strong about my pain just  because there is someone else in the world who has worse pain?  (Physical or  emotional)   Usually when you vent, you don’t want to hear an explanation.  The venting gets  you through it all by itself.  But, here is my take on that person.  She was  either having a medical problem or was with someone who did.  When she saw  you, it made her even more sad.  When you explained that it was arthritis, she  innocently assumed it was, as someone pointed out, just the temporary pain you  hear about on commercials.  She was relieved to not have to face anymore pain  that day, and made the comment as a way of saying to herself that it wasn’t  serious…then again, she could be a self-absorbed spoiled creep! Take care. Amy  

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Evelyn, I am so sorry to hear that your daughter has to endure such emotional pain as well has her physical pain.  Such a response from a so-called adult is inexcusable!  And people say that *children* are cruel? Janet – Hide quoted text — Show quoted text – Today Elena was in tears. She had planned to do something after school with a friend, but didn’t get to because the mother of her friend wouldn’t give her a ride home from their house. She thought Elena should be able to walk, and that she’s a "nuisance with her arthritis." Poor Elena. All I could tell her is that I’m sorry some people are not nice, and really sorry that a grownup was not nice to her, but that she will run into them from time to time. It’s too bad it’s happening already. Evelyn (mother of Elena, who has JRA)

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Hi All, I get sooo steamed at this type of ignorance!!! Agree or not i’m with Krissy.Sorry, i even laughed at an imagine of her beating her with her splints.. I feel better…(ha ha) Thanks Krissy. Rachel

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Eldridge-Diaz) writes: Today Elena was in tears. She had planned to do something after school with a friend, but didn’t get to because the mother of her friend wouldn’t give her a ride home from their house. She thought Elena should be able to walk, and that she’s a "nuisance with her arthritis." Poor Elena. All I could tell her is that I’m sorry some people are not nice, and really sorry that a grownup was not nice to her, but that she will run into them from time to time. It’s too bad it’s happening already. Evelyn (mother of Elena, who has JRA)

Let’s form a posse and track this woman down.  As adults, we have much greater control over our environments than children do and it just fries me to see children victimized in such a way.   In our own communities, there are children who do not have the good fortune to have you for a mother.  They are out there with  the disadvantages of these disabilities.  Rather than just expressing rage over the injustices, many of us have the expertise of experience to be advocates for these children, even on a volunteer basis.  Giving brings sense to so much of this loss.  It brings joy, purpose and an energy that can move beyond the fatigue of these diseases. Carol                 Human beings are flawed individuals…the cosmic bakers took us out a little too early.  That’s why we’re as crazy as we are—Jimmy Buffett

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        Those commercials really make me grind my teeth.  I have wondered if there isn’t something that could be done about them.  I think they are dangerous, and are at least partially responsable for a lot of people not getting treatment in the early stages.  They are disseminating misleading information to an ill informed public.         I, for one, used lots of over the counter Motrin for a couple of years.  Eventually, I got to a point where I was taking literally handfuls of the stuff; 8 every 4 hours.  I didn’t know what else to do.  At that point, I didn’t know anything about arthritis.  I thought it was something old people got and was a natural part of the aging process.  I had no idea that it was a disease and that people went to the doctor for it.         I blame the drug manufaturers for a part of that.  I also blame the Arthritis Foundation.  Personally, I feel that the reason that most people have little real understanding of this disease is the they have simply failed to inform them.  Where are the public service advertisment spots on tv?  Where are the bus signs?  WHERE’S THE ARTHRITIS TELETHON??         One of the things that my wife and I have said we are going to do if I ever get to a point where I have more energy is become involved in finding ways to inform the public about this disease.  At this point, I think we either need to get the Arthritis Foundation to make public education a higher priority, or we  need to start another organization that has arthritis education as it’s goal.         Oh ya, and while we’re at it, maybe we can get those Aleve ads reworded, too.  That way I won’t have to grind my teeth when I watch ER. —– The Skipper – Hide quoted text — Show quoted text – Most people hear the word arthritis and think of all those people on TV commercials who are back to normal after popping a couple of pills.  I really hate "minor arthritis pain".  Most people don’t realize that there are many kinds of arthritis and that they can be incredibly debilitating.  It’s awful to say this, but I almost wish that there were some famous celebrity (other than OJ) who had "major arthritis pain" like many of us here.  It would at least raise awareness of this disease among the general populace. But, I don’t wish this kind of pain on anyone.   Anita

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Today Elena was in tears. She had planned to do something after school with a friend, but didn’t get to because the mother of her friend wouldn’t give her a ride home from their house. She thought Elena should be able to walk, and that she’s a "nuisance with her arthritis." Poor Elena. All I could tell her is that I’m sorry some people are not nice, and really sorry that a grownup was not nice to her, but that she will run into them from time to time. It’s too bad it’s happening already. Evelyn (mother of Elena, who has JRA)

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was "Oh, everybody has arthritis!", then proceeded to tell me that her back was bothering her.  AAARRRRGGHH!    Now now.  The lady’s back probably *was* bothering her.  The "everybody has arthritis" is clearly inaccurate, but it does raise an interesting perceptual quirk – that peoples’ own sufferings are bigger in their minds than yours are.  Unfortunate, but it is *their* perspective.

Most people hear the word arthritis and think of all those people on TV commercials who are back to normal after popping a couple of pills.  I really hate "minor arthritis pain".  Most people don’t realize that there are many kinds of arthritis and that they can be incredibly debilitating.  It’s awful to say this, but I almost wish that there were some famous celebrity (other than OJ) who had "major arthritis pain" like many of us here.  It would at least raise awareness of this disease among the general populace. But, I don’t wish this kind of pain on anyone.   Anita —

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"zzub,zzub. MIAAAAAAAAAOW. Crunch….munch." 2.  Why is your pain always insignificant and their the end of the world?

Am familiar with this one. I suppose to them it *does* really really hurt, but I get tired of people telling me their shoulder hurts too when this is because they have carried bags home or moved the furniture, or played squash four times a week, and it’ll be better soon! Besides which, that is NOT shiulder and neck pain. Shoulder and neck pain is when you can’t lie on your back because it’s too tender and you can’t lie on your front because then your arms have to go somewhere and that hurts. I take two tylex, hot milk and then lie with the sore bit on my hot water bottle. – Hide quoted text — Show quoted text –

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Hi, gang.   I know this topic has been done, probably to death, before, but I am so annoyed right now I could punch something (if I could make a fist, that is).  I am still active duty Military and I bumped into an old "friend"  at the hospital clinics today who asked me "What are you doing here?"  I told her I am seeing a Rheumatologist for RA, and her every-so-thoughtful reply was "Oh, everybody has arthritis!", then proceeded to tell me that her back was bothering her.  AAARRRRGGHH! The questions that came to mind as I walked slowly to my car are: 1.  Why do people ask questions they don’t care to hear the answers to? 2.  Why is your pain always insignificant and their the end of the world? 3.  Why do I give a damn what someone like that thinks or says, anyway? (We were never that close). 4.  Was she hoping I’d say something obviously dreadful, like cancer? Thanks for listening. Janet

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I know this topic has been done, probably to death, before,

    Ahem.  This is Usenet.  Here there are no dead horses badly enough decomposed to deter even another moment of abuse. but I am so annoyed right now I could punch something (if I could make a fist, that is).  I am still active duty Military and I bumped into an old "friend"  at the hospital clinics today who asked me "What are you doing here?"  I told her I am seeing a Rheumatologist for RA, and her every-so-thoughtful reply was "Oh, everybody has arthritis!", then proceeded to tell me that her back was bothering her.  AAARRRRGGHH!

    Now now.  The lady’s back probably *was* bothering her.  The "everybody has arthritis" is clearly inaccurate, but it does raise an interesting perceptual quirk – that peoples’ own sufferings are bigger in their minds than yours are.  Unfortunate, but it is *their* perspective. The questions that came to mind as I walked slowly to my car are: 1.  Why do people ask questions they don’t care to hear the answers to?

    I dunno.  Why did you just ask that one?  IMO most people ask just because it’s the polite thing to do – but even if you supply them with full gory details there’s still nothing much they can do. It’s a tricky tightrope balancing between sympathy and pity.     There’s also the consideration that since this women was hanging around in the hospital she might have been a little too nervous about her own condition to really devote her full attention to you.   Sometimes when people are trying their hardest to conceal their fear on the outside, you can guess that they’re also probably struggling to conceal their fear on the inside too. 2.  Why is your pain always insignificant and their the end of the world?

    Well, unlike our president, most people cannot "feel your pain". IMO it’s not even a particularly gracious thing to do to try to regale non-medical passers-by with descriptions of how bad it really is.  If they can’t do anything for you except pity you then why bother? 3.  Why do I give a damn what someone like that thinks or says, anyway?  (We were never that close).

    That’s a pretty good question.  My boss was unsympathetic   earlier this week on the subject of why I’m so far behind, and I have to admit that his wisecracks really bugged me.  Of course between my flaring joints, a bout of flu, and an old feline friend who had to be put to sleep on Monday I confess I didn’t have any more sympathy for him than he had for me.  His comment that really got my goat was when he asked me "Do you like your job?"  If I didn’t like my job then I wouldn’t still be in it after 7 years.  The truth is I do love my job.  The thing I hate is his stinking attitude. 4.  Was she hoping I’d say something obviously dreadful, like cancer?

    I doubt she was hoping that.  I heard somewhere that when you’re given the choice of assuming someone’s motives are based in ignorance or malice, ignorance is almost always the more credible alternative.  I shouldn’t make apologies for that lady, but I strongly suspect that she just didn’t understand how her words were going to affect you. — Nathan Engle               Electron Juggler Indiana University         Dept of Psychology "Some Assembly Required"

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Wow, I have been on medical leave since Feb.  Trying differernt treatmentss,  etc, and not readfy to go back to work,  My RD is so supportive, but I live in  a very small town and on days  when  I feel I can drive and do shopping, I  invaribly run into people   who know me in my  job and since I happen  to be  able to walk that day and push a grocery cart they wonder why  I  am not at  work.  I feel weird, and some guilt, but I know that I can never explain to  them the other days when I cannot walk,  go to the bathroom by myself, and  give my daughter the mothering she needs. Or the care that my husband needs,  That they take care of me, in ways that I would never ask them to if I did not  have this disease.   Thank god that they love me so much and thank you all for  this board.  I could not hack it without.   THANKS

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was "Oh, everybody has arthritis!", then proceeded to tell me that her back was bothering her.  AAARRRRGGHH! Most people hear the word arthritis and think of all those people on TV commercials who are back to normal after popping a couple of pills.  I really hate "minor arthritis pain".  Most people don’t realize that there are many kinds of arthritis snip Anita

- my all time favorite is when i was a teenager with joint replacements in an electric chair in the hospital for month 5iive of PT and a fellow patient or visitor would ask "what is wrong with you dear?", and when i replied arthritis they would say," i know isn’t it awful, the dr said i can’t play golf for three weeks!". i always wanted to say ‘REALLY! I haven’t been able to wipe my ass for three years!" -kathleen

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this post started my dreary day with a chuckle. thanks. it’s funny how we can  be so polite to people who make thoughtless remarks, when we really wanna hit  ’em up side the head with a titanium joint.  la

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Welcome back, drdoc! How was your trip out here to Sunny California? Hope you managed to squeeze in some vacation time, since we’ve had such beautiful weather in the last week or so. Did you learn anything new about arthritis? Evelyn (mother of Elena, who has JRA)

Thanks… I was there attending a cox-2 symposium – centering on celecoxib… Which im currently doing a study on.. It sounds like an advance that will be welcomed by many arthritis patients in the future. Next week i shall be back in the USA again on another conference.. in Washington DC ( The ACR) and … I shall be meeting Dr Susan Hoch there) However – this time it will be a 2 week trip…. so hold those personal emails to me between the 3rd – 16 Nov 1997. After that I will try catch up… Regards drdoc http://www.aztec.co.za/users/drdoc/

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I’ve found treating RA is a "crap shoot". One mix works fine for a while, and then suddenly doesn’t work anymore. And you start hunting for the right combination again.  I know – I’ve had RA for approx. 20 years.  I started taking the antibiotic therapy about a month or so ago, after I got on the internet, and read about it for the first time.  I admit to being somewhat cynical about it, but I was also desperate.  (Never desperate enough to try some of what I call snake oils, though)  It’s working for me – or something is.  Maybe a combination of everything I’m taking is finally kicking in, maybe it’s the power of suggestion, or maybe the RA just quieted down on its’ own for a while.  I don’t care why, it just did.  And do you suppose I’d get attacked if I say the methotrexate quit working for me?  As did gold shots, and most of the NSAIDS.  Ignore the attacks – they have no added value.  Keep the faith, and keep truckin…. SharonH

Great news that the antibiotics work for you.  The theory behind them makes sense, though I don’t think everyone’s arthritis has the same origin. It does make sense, though, that if the cause were related to an immune response to attack that antibiotics would work.  That’s why I hung in there so long with them.  I had a bad case of pneumonia the year before I was diagnosed.  Perhaps the pneumonia was the trigger….oh, I can ramble. Anyway, it would also seem that since you are getting positive results from antibiotics you have closed in on the avenue for treatment.  For some reason, it doesn’t sound like it would lose it’s effectiveness. Hope you are getting out to enjoy the beautiful fall weather.  Feeling good and fresh air go together! Carol                 Human beings are flawed individuals…the cosmic bakers took us out a little too early.  That’s why we’re as crazy as we are—Jimmy Buffett

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Today Elena was in tears. She had planned to do something after school with a friend, but didn’t get to because the mother of her friend wouldn’t give her a ride home from their house. She thought Elena should be able to walk, and that she’s a "nuisance with her arthritis." Poor Elena. All I could tell her is that I’m sorry some people are not nice, and really sorry that a grownup was not nice to her, but that she will run into them from time to time. It’s too bad it’s happening already. Evelyn (mother of Elena, who has JRA)

Thats why you can never have enough education of the public AND the doctors. Many people think its just an mild ache and pain that gets better with herbs and spices. Thinking of you all…. Regards drdoc

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Today Elena was in tears. She had planned to do something after school with a friend, but didn’t get to because the mother of her friend wouldn’t give her a ride home from their house. She thought Elena should be able to walk, and that she’s a "nuisance with her arthritis." Poor Elena. All I could tell her is that I’m sorry some people are not nice, and really sorry that a grownup was not nice to her, but that she will run into them from time to time. It’s too bad it’s happening already. Evelyn (mother of Elena, who has JRA)

That is soooo disgusting, I don’t understand how any "adult" can be that cruel to a child.  She sure has a lot of "growing up" to do.  I hope her daughter has more sense than her mother.  I hope Elena feels better and realizes that there are a lot of selfish idiots in this world.

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It’s sad that you were attacked because you said the antibiotic didn’t work.   If your attackers don’t know it yet, they will eventually – not everything works for everyone all the time.  You know, it’s kind of like you can fool all of the people some of the time, you can fool some of the people all the time, but you can’t fool all the people all the time. Medications work the same way.  I’ve found treating RA is a "crap shoot". One mix works fine for a while, and then suddenly doesn’t work anymore. And you start hunting for the right combination again.  I know – I’ve had RA for approx. 20 years.  I started taking the antibiotic therapy about a month or so ago, after I got on the internet, and read about it for the first time.  I admit to being somewhat cynical about it, but I was also desperate.  (Never desperate enough to try some of what I call snake oils, though)  It’s working for me – or something is.  Maybe a combination of everything I’m taking is finally kicking in, maybe it’s the power of suggestion, or maybe the RA just quieted down on its’ own for a while.  I don’t care why, it just did.  And do you suppose I’d get attacked if I say the methotrexate quit working for me?  As did gold shots, and most of the NSAIDS.  Ignore the attacks – they have no added value.  Keep the faith, and keep truckin…. SharonH – Hide quoted text — Show quoted text – Thanks Ali,  there seems to be a religious zeal concerning antibiotic therapy.  About a year ago, I posted that it did not work for me.  Wow! That really made some people angry, e-mailing me with rants about how I must have done something wrong…that I must have skipped doses or that the dose, itself, must have been off.  Or that I hadn’t been on it long enough.  This is the last place I’d expect to find a "blame the victim" mentality.

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Today Elena was in tears. She had planned to do something after school with a friend, but didn’t get to because the mother of her friend wouldn’t give her a ride home from their house. She thought Elena should be able to walk, and that she’s a "nuisance with her arthritis." Poor Elena. All I could tell her is that I’m sorry some people are not nice, and really sorry that a grownup was not nice to her, but that she will run into them from time to time. It’s too bad it’s happening already.

Hi, Evelyn! I am soooooo sorry to hear that Elena had to have this experience with an adult!!! I guess it only reflects the lack of understanding most of us meet in our daily lifes… Many people don’t have a clue about how much impact joint problems can have on our ability to e.g. walk or do other things. Many times it boils down to wheather or not people _listen_ to what you’re saying and then regard you as the best judge of your abilities. Obviously this woman is one of those people, which makes me agree with you – she isn’t nice!!! PS! Does the AF have any nice brochures telling about the problems JRA sufferers have, describing common difficulties with activities etc? Such brochures could be a nice thing to hand out to friends’ parents etc… Hope you’re doing better after you got "stabbed" the other day!!! — Best regards,                 Visit my homepage: Med vennlig hilsen,          <URL:http://home.newmedia.no/flaker/ _Aase Marit_ ))))))

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Given all this new craze on the board about antibiotic therapy lately, I decided to ask my rheum about how his patients are doing. He says that he has not had all that much success with the therapy and has also found that over half of his patients who have been on the therapy for more than 6 months develop some type of rash, like a bruise in different areas on the body. He has found that this does not go away after therapy is stopped. He does continue to use the therapy with some patients who really want to try it or have tried everything else without success. I guess some of his pts. are successful on it, but the majority of his are not… I have read some of the articles on this therapy and I do think that it probably will begin to get more publicity in the future. I really would like to see some published studies about the negative affects of this med. It seems that there are only research from people who believe in its success. But before any therapy can really be accepted into the medical community, it must be subjected to many studies, looking at both its positive and negative affects, and then the benefits/side effects are weighed.   I apologize if this note begins another huge debate on the board… but I figured that since I asked the rheum, I might as well share with you what his experience has been… —Ali life is what happens when you’re making other plans…

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Personally, I feel that the reason that most people have little real understanding of this disease is the they have simply failed to inform them.

Hi, Skipper! May I extend that one to _these_ diseases? I agree, most people don’t know a thing about the fact that there’s lots of different types of _inflammatory_ arthritis. Most people probably think about OA when they think of arthritis, or the good ol’ rheumatism (whatever that really is) … — Best regards,                 Visit my homepage: Med vennlig hilsen,          <URL:http://home.newmedia.no/flaker/ _Aase Marit_ ))))))

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Today Elena was in tears. She had planned to do something after school with a friend, but didn’t get to because the mother of her friend wouldn’t give her a ride home from their house. She thought Elena should be able to walk, and that she’s a "nuisance with her arthritis." Poor Elena. All I could tell her is that I’m sorry some people are not nice, and really sorry that a grownup was not nice to her, but that she will run into them from time to time. It’s too bad it’s happening already. Evelyn (mother of Elena, who has JRA)

How awful!  It’s bad enough for us adults to deal with stupidity, but it must be awful for a child.  You sound like you handled the situation well.  I’d be inclined to give that person an earful! Anita —

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Today Elena was in tears. She had planned to do something after school with a friend, but didn’t get to because the mother of her friend wouldn’t give her a ride home from their house. She thought Elena should be able to walk, and that she’s a "nuisance with her arthritis." Poor Elena. All I could tell her is that I’m sorry some people are not nice, and really sorry that a grownup was not nice to her, but that she will run into them from time to time. It’s too bad it’s happening already. Evelyn (mother of Elena, who has JRA)

I was so upset to hear of your daughter’s experience. You expect children to be ignorant of situations like this but not their parents. I don’t know how strongly you feel about it but I would clue this woman in so that your daughter will at least know she has been informed and if she acts poorly in the future then it is not ignorance but lack of compassion. You are right to tell her she will find people like this from time to time. Keep up the good work mom. Catherine "And the beat goes on."

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There is one sure thing that I learned from this disease.  The only people who understand what it feels like to have this disease are those afflicted with it.  I’ve stopped trying to explain my pain and frustration with the disease to others.  They don’t care! I truly understand how you feel.  I know it’s hard, but don’t let it get to you.

Please don’t assume everyone doesn’t want to understand.  I have been reading  this group for over a year now since my sister-in-law found it.  She has had  JRA for about 12 years, I think.  I like to think that I am sensitive to what  she has to deal with.  I also have learned some things reading this group –  like how much pain a handshake can cause.  I think she has learned about  things I have dealt with, by me sharing them with her.  Arthritis definitely  is a misunderstood disease among those who don’t have it or haven’t lived with  a person close to them who has it, but I wouldn’t assume it is because no one  cares.  Like someone said, it is associated with older people and there are so  many problems associated with old age that it is overwhelming and hard to  focus on.  When I explain to someone that my sister-in-law has arthritis and  how debilitating it is, they are sympathetic.  When I talk about my  grandfather who has Alzheimers and doesn’t recognize my grandmother much (let  alone me or my mother!), it is a different story.  Right or not, until people  stop associating arthritis with old age, people will likely assume that your  stiffness will go away in a few days and there is little pain.  I, for one,  will always be interested to hear about a new disease and the effects, if  anyone is interested in sharing them.  The more I understand what people are  dealing with, the easier it makes it for me to accept a mean comment, bad  attitide, or the like.  But I still think we all deserve the right to complain  about what we are going through.  You can always find someone who is going  through something worse than you.  Must I always be strong about my pain just  because there is someone else in the world who has worse pain?  (Physical or  emotional)   Usually when you vent, you don’t want to hear an explanation.  The venting gets  you through it all by itself.  But, here is my take on that person.  She was  either having a medical problem or was with someone who did.  When she saw  you, it made her even more sad.  When you explained that it was arthritis, she  innocently assumed it was, as someone pointed out, just the temporary pain you  hear about on commercials.  She was relieved to not have to face anymore pain  that day, and made the comment as a way of saying to herself that it wasn’t  serious…then again, she could be a self-absorbed spoiled creep! Take care. Amy  

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Evelyn, I am so sorry to hear that your daughter has to endure such emotional pain as well has her physical pain.  Such a response from a so-called adult is inexcusable!  And people say that *children* are cruel? Janet – Hide quoted text — Show quoted text – Today Elena was in tears. She had planned to do something after school with a friend, but didn’t get to because the mother of her friend wouldn’t give her a ride home from their house. She thought Elena should be able to walk, and that she’s a "nuisance with her arthritis." Poor Elena. All I could tell her is that I’m sorry some people are not nice, and really sorry that a grownup was not nice to her, but that she will run into them from time to time. It’s too bad it’s happening already. Evelyn (mother of Elena, who has JRA)

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Hi All, I get sooo steamed at this type of ignorance!!! Agree or not i’m with Krissy.Sorry, i even laughed at an imagine of her beating her with her splints.. I feel better…(ha ha) Thanks Krissy. Rachel

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Eldridge-Diaz) writes: Today Elena was in tears. She had planned to do something after school with a friend, but didn’t get to because the mother of her friend wouldn’t give her a ride home from their house. She thought Elena should be able to walk, and that she’s a "nuisance with her arthritis." Poor Elena. All I could tell her is that I’m sorry some people are not nice, and really sorry that a grownup was not nice to her, but that she will run into them from time to time. It’s too bad it’s happening already. Evelyn (mother of Elena, who has JRA)

Let’s form a posse and track this woman down.  As adults, we have much greater control over our environments than children do and it just fries me to see children victimized in such a way.   In our own communities, there are children who do not have the good fortune to have you for a mother.  They are out there with  the disadvantages of these disabilities.  Rather than just expressing rage over the injustices, many of us have the expertise of experience to be advocates for these children, even on a volunteer basis.  Giving brings sense to so much of this loss.  It brings joy, purpose and an energy that can move beyond the fatigue of these diseases. Carol                 Human beings are flawed individuals…the cosmic bakers took us out a little too early.  That’s why we’re as crazy as we are—Jimmy Buffett

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        Those commercials really make me grind my teeth.  I have wondered if there isn’t something that could be done about them.  I think they are dangerous, and are at least partially responsable for a lot of people not getting treatment in the early stages.  They are disseminating misleading information to an ill informed public.         I, for one, used lots of over the counter Motrin for a couple of years.  Eventually, I got to a point where I was taking literally handfuls of the stuff; 8 every 4 hours.  I didn’t know what else to do.  At that point, I didn’t know anything about arthritis.  I thought it was something old people got and was a natural part of the aging process.  I had no idea that it was a disease and that people went to the doctor for it.         I blame the drug manufaturers for a part of that.  I also blame the Arthritis Foundation.  Personally, I feel that the reason that most people have little real understanding of this disease is the they have simply failed to inform them.  Where are the public service advertisment spots on tv?  Where are the bus signs?  WHERE’S THE ARTHRITIS TELETHON??         One of the things that my wife and I have said we are going to do if I ever get to a point where I have more energy is become involved in finding ways to inform the public about this disease.  At this point, I think we either need to get the Arthritis Foundation to make public education a higher priority, or we  need to start another organization that has arthritis education as it’s goal.         Oh ya, and while we’re at it, maybe we can get those Aleve ads reworded, too.  That way I won’t have to grind my teeth when I watch ER. —– The Skipper – Hide quoted text — Show quoted text – Most people hear the word arthritis and think of all those people on TV commercials who are back to normal after popping a couple of pills.  I really hate "minor arthritis pain".  Most people don’t realize that there are many kinds of arthritis and that they can be incredibly debilitating.  It’s awful to say this, but I almost wish that there were some famous celebrity (other than OJ) who had "major arthritis pain" like many of us here.  It would at least raise awareness of this disease among the general populace. But, I don’t wish this kind of pain on anyone.   Anita

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Today Elena was in tears. She had planned to do something after school with a friend, but didn’t get to because the mother of her friend wouldn’t give her a ride home from their house. She thought Elena should be able to walk, and that she’s a "nuisance with her arthritis." Poor Elena. All I could tell her is that I’m sorry some people are not nice, and really sorry that a grownup was not nice to her, but that she will run into them from time to time. It’s too bad it’s happening already. Evelyn (mother of Elena, who has JRA)

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was "Oh, everybody has arthritis!", then proceeded to tell me that her back was bothering her.  AAARRRRGGHH!    Now now.  The lady’s back probably *was* bothering her.  The "everybody has arthritis" is clearly inaccurate, but it does raise an interesting perceptual quirk – that peoples’ own sufferings are bigger in their minds than yours are.  Unfortunate, but it is *their* perspective.

Most people hear the word arthritis and think of all those people on TV commercials who are back to normal after popping a couple of pills.  I really hate "minor arthritis pain".  Most people don’t realize that there are many kinds of arthritis and that they can be incredibly debilitating.  It’s awful to say this, but I almost wish that there were some famous celebrity (other than OJ) who had "major arthritis pain" like many of us here.  It would at least raise awareness of this disease among the general populace. But, I don’t wish this kind of pain on anyone.   Anita —

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"zzub,zzub. MIAAAAAAAAAOW. Crunch….munch." 2.  Why is your pain always insignificant and their the end of the world?

Am familiar with this one. I suppose to them it *does* really really hurt, but I get tired of people telling me their shoulder hurts too when this is because they have carried bags home or moved the furniture, or played squash four times a week, and it’ll be better soon! Besides which, that is NOT shiulder and neck pain. Shoulder and neck pain is when you can’t lie on your back because it’s too tender and you can’t lie on your front because then your arms have to go somewhere and that hurts. I take two tylex, hot milk and then lie with the sore bit on my hot water bottle. – Hide quoted text — Show quoted text –

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Hi, gang.   I know this topic has been done, probably to death, before, but I am so annoyed right now I could punch something (if I could make a fist, that is).  I am still active duty Military and I bumped into an old "friend"  at the hospital clinics today who asked me "What are you doing here?"  I told her I am seeing a Rheumatologist for RA, and her every-so-thoughtful reply was "Oh, everybody has arthritis!", then proceeded to tell me that her back was bothering her.  AAARRRRGGHH! The questions that came to mind as I walked slowly to my car are: 1.  Why do people ask questions they don’t care to hear the answers to? 2.  Why is your pain always insignificant and their the end of the world? 3.  Why do I give a damn what someone like that thinks or says, anyway? (We were never that close). 4.  Was she hoping I’d say something obviously dreadful, like cancer? Thanks for listening. Janet

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I know this topic has been done, probably to death, before,

    Ahem.  This is Usenet.  Here there are no dead horses badly enough decomposed to deter even another moment of abuse. but I am so annoyed right now I could punch something (if I could make a fist, that is).  I am still active duty Military and I bumped into an old "friend"  at the hospital clinics today who asked me "What are you doing here?"  I told her I am seeing a Rheumatologist for RA, and her every-so-thoughtful reply was "Oh, everybody has arthritis!", then proceeded to tell me that her back was bothering her.  AAARRRRGGHH!

    Now now.  The lady’s back probably *was* bothering her.  The "everybody has arthritis" is clearly inaccurate, but it does raise an interesting perceptual quirk – that peoples’ own sufferings are bigger in their minds than yours are.  Unfortunate, but it is *their* perspective. The questions that came to mind as I walked slowly to my car are: 1.  Why do people ask questions they don’t care to hear the answers to?

    I dunno.  Why did you just ask that one?  IMO most people ask just because it’s the polite thing to do – but even if you supply them with full gory details there’s still nothing much they can do. It’s a tricky tightrope balancing between sympathy and pity.     There’s also the consideration that since this women was hanging around in the hospital she might have been a little too nervous about her own condition to really devote her full attention to you.   Sometimes when people are trying their hardest to conceal their fear on the outside, you can guess that they’re also probably struggling to conceal their fear on the inside too. 2.  Why is your pain always insignificant and their the end of the world?

    Well, unlike our president, most people cannot "feel your pain". IMO it’s not even a particularly gracious thing to do to try to regale non-medical passers-by with descriptions of how bad it really is.  If they can’t do anything for you except pity you then why bother? 3.  Why do I give a damn what someone like that thinks or says, anyway?  (We were never that close).

    That’s a pretty good question.  My boss was unsympathetic   earlier this week on the subject of why I’m so far behind, and I have to admit that his wisecracks really bugged me.  Of course between my flaring joints, a bout of flu, and an old feline friend who had to be put to sleep on Monday I confess I didn’t have any more sympathy for him than he had for me.  His comment that really got my goat was when he asked me "Do you like your job?"  If I didn’t like my job then I wouldn’t still be in it after 7 years.  The truth is I do love my job.  The thing I hate is his stinking attitude. 4.  Was she hoping I’d say something obviously dreadful, like cancer?

    I doubt she was hoping that.  I heard somewhere that when you’re given the choice of assuming someone’s motives are based in ignorance or malice, ignorance is almost always the more credible alternative.  I shouldn’t make apologies for that lady, but I strongly suspect that she just didn’t understand how her words were going to affect you. — Nathan Engle               Electron Juggler Indiana University         Dept of Psychology "Some Assembly Required"

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Question:

My sister had her second MRI and there is a definite lesion on her spine.  They are still not certain if it is MS so she will go in for a spinal tap late this week.  In the meantime she is on a prednisone pulse of 1200 mgs for 3 days.   Yes that is the correct dosage.  The Dr has still not ruled out a tumor or cyst.  I told her to explain to her family that her behavior might be erratic the next few days, and I suggested that she not go to work.  She has a history of severe clinical depression so I am worried about her.  Dr is leaning  his diagnosis to a demyelination process.  Please keep her in your thoughts and prayers her condition continues to worsen.  We grew-up in an area with an extremely high incidence of MS. — MZ — website: http://members.home.net/mzuschlag

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Mary, You and your sister are in my thoughts! debbie m. http://www.angelfire.com/ga2/angels1/

– Hide quoted text — Show quoted text – My sister had her second MRI and there is a definite lesion on her spine. They are still not certain if it is MS so she will go in for a spinal tap late this week.  In the meantime she is on a prednisone pulse of 1200 mgs for 3 days. Yes that is the correct dosage.  The Dr has still not ruled out a tumor or cyst.  I told her to explain to her family that her behavior might be erratic the next few days, and I suggested that she not go to work.  She has a history of severe clinical depression so I am worried about her.  Dr is leaning his diagnosis to a demyelination process.  Please keep her in your thoughts and prayers her condition continues to worsen.  We grew-up in an area with an extremely high incidence of MS. — MZ — website: http://members.home.net/mzuschlag

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My prayers are with you both. What is her first name — I do better with my prayers when I actually have a name. You have probably already told me but my foggy brain …… Duckie – Hide quoted text — Show quoted text – My sister had her second MRI and there is a definite lesion on her spine.  They are still not certain if it is MS so she will go in for a spinal tap late this week.  In the meantime she is on a prednisone pulse of 1200 mgs for 3 days. Yes that is the correct dosage.  The Dr has still not ruled out a tumor or cyst.  I told her to explain to her family that her behavior might be erratic the next few days, and I suggested that she not go to work.  She has a history of severe clinical depression so I am worried about her.  Dr is leaning  his diagnosis to a demyelination process.  Please keep her in your thoughts and prayers her condition continues to worsen.  We grew-up in an area with an extremely high incidence of MS. — MZ — website: http://members.home.net/mzuschlag

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My prayers are with you both. What is her first name — I do better with my prayers when I actually have a name. You have probably already told me but my foggy brain …… Duckie

Sandy is her name. Thanks I sent her flowers this weekend so she knows I am thinking about her. — MZ — website: http://members.home.net/mzuschlag

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{{{{Sandy}}}}} Will keep her in my thoughts Mary. Please keep us posted. ~KJ Akron, Ohio http://arthritisinsight.com Knowledge is power…support is essential. My eBay Gallery: http://www.fadedjeans.com/tina/

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(((Mary and Sandy))) I will keep you both in my thoughts and prayers. Kelly C.

– Hide quoted text — Show quoted text – My sister had her second MRI and there is a definite lesion on her spine. They are still not certain if it is MS so she will go in for a spinal tap late this week.  In the meantime she is on a prednisone pulse of 1200 mgs for 3 days. Yes that is the correct dosage.  The Dr has still not ruled out a tumor or cyst.  I told her to explain to her family that her behavior might be erratic the next few days, and I suggested that she not go to work.  She has a history of severe clinical depression so I am worried about her.  Dr is leaning his diagnosis to a demyelination process.  Please keep her in your thoughts and prayers her condition continues to worsen.  We grew-up in an area with an extremely high incidence of MS. — MZ — website: http://members.home.net/mzuschlag

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Please keep her in your thoughts and prayers her condition continues to worsen.  

You got em kiddo.  But you knew that. Char "Remember, I’m pulling for ya’.  We’re all in this together."  Red Green

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Prayers going up. Gwen

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Sending Good thoughts, {{{{Sandy}}}} GramPaHugs, Alex, My sister had her second MRI and there is a definite lesion on her spine.  They are still not certain if it is MS so she will go in for a spinal tap late this week.  In the meantime she is on a prednisone pulse of 1200 mgs for 3 days. Yes that is the correct dosage.  The Dr has still not ruled out a tumor or cyst.  I told her to explain to her family that her behavior might be erratic the next few days, and I suggested that she not go to work.  She has a history of severe clinical depression so I am worried about her.  Dr is leaning  his diagnosis to a demyelination process.  Please keep her in your thoughts and prayers her condition continues to worsen.  We grew-up in an area with an extremely high incidence of MS. — MZ — website: http://members.home.net/mzuschlag

–  Any information is included for informational  or entertainment purposes only,  No endorsement is implied or intended. * Love radiating from 45.10n x 93.30w   M/SP Mn * Care giver to THE SACRED TEMPLE CATS of the Kingdom of W.H.I.N.E. * <a href="http://home.mn.rr.com/apbiii/whine.html"AOL Click</a * Medical Links,  Photo’s http://barna.dns2go.com/ * <a href="http://home.mn.rr.com/apbiii/medical.htm"AOL Click</a * Don’t worry about life, *  you’re not going to survive it anyway

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I talked with her tonight and she sounded pretty good.  This is her first day of the prednisone burst.  She was a little wired, but didn’t seem at all depressed or grumpy.  There is a conference in Albuquerque later this month and   my boss wants me to go in her place.  So I will be paying Sandy a visit.  She is really strong; when the clinical depression was severe she had the courage to request hospitalization.  Many folks don’t have that strength.  She looked at the links Diane sent and she said some of the support networks were especially comforting to her.  Don’t we all agree! — MZ — website: http://members.home.net/mzuschlag

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I talked with her tonight and she sounded pretty good.  This is her first day of the prednisone burst.  She was a little wired, but didn’t seem at all depressed or grumpy.  There is a conference in Albuquerque later this month and my boss wants me to go in her place.  So I will be paying Sandy a visit.  She is really strong; when the clinical depression was severe she had the courage to request hospitalization.  Many folks don’t have that strength.  She looked at the links Diane sent and she said some of the support networks were especially comforting to her.  Don’t we all agree! — MZ —

Hi Mary,  That is strenth and it has to come from a person who realizes that they are in trouble that they cannot handle themselves.  Even then some people do not climb out of that well.  I know that you are THERE for your sister and she is lucky to have you.  That strength must run in the family.  You both are named in my prayers.  We are not alone as long as we have each other. Harv

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Sandy is her name. Thanks I sent her flowers this weekend so she knows I am thinking about her. — MZ —

She will be in my thoughts and prayers. Try to feel positive when you are thinking about her.  Not easy under the circumstances, granted. But it sounds like you need all the positive energy you can get a handle on yourself right now.  So make a conscious effort when worrying about Sandy starts to take over your mind, to replace the worry with a positive memory of something the two of you share. Sounds like you might need a few flowers too.  We have the fall burst of roses in bloom and some Morning Glories. Jo

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My sister had her second MRI and there is a definite lesion on her spine.

I will be sending my positive thoughts too. If Sandy is half as strong as her sister Mary she will fight this thing tooth and nail. Rose

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Please keep her in your thoughts and prayers her condition continues to worsen.  We grew-up in an area with an extremely high incidence of MS.

She’s on our prayer list.  We, Susan and I, hope it is just a minor cyst and it goes away. — Be Well, Larry — Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com).

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Prayers, hugs, and good thoughts going out to all.  Do hope the doctors can get this all figured out real soon and start immediate treatment!!! MaryZ…I am praying for you all, but know you are also having your own set of troubles.  Please take care of yourself, as your sister is really going to need you!!! God bless you all!!! Donna G

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Mary, You and your sister are in my thoughts! debbie m.

and mine. Harv

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Wishing Sandy the best…with gentle hugs and healing vibes. {{{Mary and Sandy}}} Soft Huggings from Rosie — "If you wanna get it done, you gotta fight for yourself." — Meat Loaf, Bat Outta Hell II

– Hide quoted text — Show quoted text – My sister had her second MRI and there is a definite lesion on her spine. They are still not certain if it is MS so she will go in for a spinal tap late this week.  In the meantime she is on a prednisone pulse of 1200 mgs for 3 days. Yes that is the correct dosage.  The Dr has still not ruled out a tumor or cyst.  I told her to explain to her family that her behavior might be erratic the next few days, and I suggested that she not go to work.  She has a history of severe clinical depression so I am worried about her.  Dr is leaning his diagnosis to a demyelination process.  Please keep her in your thoughts and prayers her condition continues to worsen.  We grew-up in an area with an extremely high incidence of MS. — MZ — website: http://members.home.net/mzuschlag

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