Posts belonging to Category 'Neuropathy From Lipitor Law Suit'

Klonopin Dosage, Strattera, Psyc Doc, Pain Management Treatment, Pain Man. Doc

Question:

– Hide quoted text — Show quoted text – Hello to all, Been away for quite a while, and just stopping in for some opinions. Here is the story.  I was originally put on Klonopin for generalized anxiety with a degree of mixed depression some 9 years ago. I have been through a variety of medications over the last nine years with Klonopin, or Xanax, or Valium, Elavil, all the SSRI’s, and a few others. As of right now, I began having pain in my right genital-femeral nerve down into the sac ( I’m male) last January, had a few nerve blocks done which helped to a degree. Anyway, right now I’m on Klonopin and by personal choice, I was given Strattera because I wanted to see if the Strattera would ease the nerve pain. The Psyc Doc had me on 4mg Klonopin daily, but around last June the Pain Management Doc said, " Lets increase the Klonopin to 6mg a day and see if it helps ease the nerve pain."  The Psych doc didn’t want to increase the Klonopin dosage, so the Pain Managment Doc prescribed the 6mg daily , then up to 7mg daily, and has been prescribing the Klonopin since then which the Psych doc doesn’t really like. I got the Psych doc to prescribe me some Strattera about 7 weeks ago. To my blessing, in addition to the Klonopin, adding the Strattera has seem to make a difference in the nerve pain. The downside of the Strattera is that it does give me chest pressure which the Klonopin helps alieviate when the Klonopin dosage is sufficient. I have had to increase the Klonopin to 8mg and 9mg in a day on a number of days to suppress the chest pressure. I tried a beta-blocker for the chest pressure, but the beta-blocker didn’t help much. Right now I use 60mg Strattera per day, and use 7mg Klonopin most days, but my chest feels like I could use 8mg or 9mg of Klonopin per day, and my Psych doc is still not pleased that the other physician is prescribing the Klonopin. If I can maintain and get by with 8mg or 9mg of Klonopin daily, and have nerve pain relief, and the generalized anxiety fairly well controlled, I would be content with the Klonopin dosage. If a Klonopin dosage that high is reasonable to use, and doesn’t cause a problem, I may have to stick with a Pain Management physician or Neurologist to prescribe the Klonopin. So, if you have an opinion about my Klonopin dosage, I would very much appreciate reading your opinion.

I’ve never heard of a benzo being used for pain relief. I’ve never heard of Strattera being used for pain relief. A tricyclic antidepressant or Effexor is usually used. "genital-femeral nerve down into the sac ( I’m male)"…….I’ve never heard of that nerve. Do you have pain in your testicle(s) or  your scrotum?  What is the pain due to? A hernia? Is the pain in the front of your thigh? (meralgia paresthetica) How does your doc explain the chest pressure from the Strattera? I would want angina (heart pain) ruled out. Strattera can cause a fast heart rate (tachycardia) and hypertension. Why is your name "Gina" is you’re male? Chip — The charter is available at:

Thanks from Sally's Friend

Question:

Hi all, Please bear with me as I learn the ropes.  I just joined and was unsure of how to respond to a previous topic, so clicked on "new topic" instead. My name is Sunny, and I am the friend that Sally just posted about.  I wanted to thank those of you who replied and let you know that I am doing much better after a day on the Seroquel. Just a little about me…  I am 47 and the single mom of two.  I have a married 27 yr old daughter.  She has a little girl who just turned two.  I also have an almost-19 year old son living at home.  He will be a freshman in college in the fall – living at home and commuting to school. I live in the central Ohio area and am currently off work while recovering from surgery.  I had gastric bypass six years ago (tomorrow) with no complications for the first four years following surgery.  I took off 100 lbs and kept it off.  I was far from the perfect patient, but did fairly well overall. The physical complications started a couple of years ago.   First my gallbladder failed, which is fairly common.  Then I was found to have nerve damage (peripheral neuropathy) from a B-12 defiency.  Then an internal hernia and surgery for that, followed by emergency surgery a week later for an obstructed bowel.  I was off work for several months with no paid sick benefits (other than not-so-good health insurance). So the financial problems were and are terrible. Prior to the physical problems, I had been on Prozac for years due to mild to moderate depression.  It runs in my family and I had just sort of accepted that the medication would be a permanent thing for me. I started having a great deal of anxiety early this calendar year when the physical problems returned.  Lots of nausea and pain, along with the realization that I would probably have to deal with more surgery and the accompanying financial problems. I had extensive surgery on July 12th, and the good news is that I seem to be recovering physically.  I’m no longer taking pain medication (a concern for me because my mother and one brother had various alcohol and drug addiction problems).  But I didn’t get the Prozac while in the hospital, and the people in my life who usually provide emotional support just weren’t there for me this time.  I think they are just worn out from my run of bad luck, and can’t say I blame them.  Plus, I am usually the strong one, so everyone probably just assumes that I am fine. You know the rest of the story… dismissed from the psych ward.  That in itself kind of precipitated a crisis.  Sally has just been wonderful.  I have such tremendous admiration for her and hope that I can give back sometime down the road. My psychiatrist retired and I am trying to find another one.  In the meantime, the Seroquel helps.  I’m also on 60 mg of Prozac, which I mistakenly thought was the max. I’m looking forward to getting to know you all, and am so glad this group exists. Sunny — The charter is available at: http://readystump.algebra.com/~asapm

Response:

- Hide quoted text — Show quoted text – Hi all, Please bear with me as I learn the ropes.  I just joined and was unsure of how to respond to a previous topic, so clicked on "new topic" instead. My name is Sunny, and I am the friend that Sally just posted about.  I wanted to thank those of you who replied and let you know that I am doing much better after a day on the Seroquel. Just a little about me…  I am 47 and the single mom of two.  I have a married 27 yr old daughter.  She has a little girl who just turned two.  I also have an almost-19 year old son living at home.  He will be a freshman in college in the fall – living at home and commuting to school. I live in the central Ohio area and am currently off work while recovering from surgery.  I had gastric bypass six years ago (tomorrow) with no complications for the first four years following surgery.  I took off 100 lbs and kept it off.  I was far from the perfect patient, but did fairly well overall. The physical complications started a couple of years ago.   First my gallbladder failed, which is fairly common.  Then I was found to have nerve damage (peripheral neuropathy) from a B-12 defiency.  Then an internal hernia and surgery for that, followed by emergency surgery a week later for an obstructed bowel.  I was off work for several months with no paid sick benefits (other than not-so-good health insurance). So the financial problems were and are terrible. Prior to the physical problems, I had been on Prozac for years due to mild to moderate depression.  It runs in my family and I had just sort of accepted that the medication would be a permanent thing for me. I started having a great deal of anxiety early this calendar year when the physical problems returned.  Lots of nausea and pain, along with the realization that I would probably have to deal with more surgery and the accompanying financial problems. I had extensive surgery on July 12th, and the good news is that I seem to be recovering physically.  I’m no longer taking pain medication (a concern for me because my mother and one brother had various alcohol and drug addiction problems).  But I didn’t get the Prozac while in the hospital, and the people in my life who usually provide emotional support just weren’t there for me this time.  I think they are just worn out from my run of bad luck, and can’t say I blame them.  Plus, I am usually the strong one, so everyone probably just assumes that I am fine. You know the rest of the story… dismissed from the psych ward.  That in itself kind of precipitated a crisis.  Sally has just been wonderful.  I have such tremendous admiration for her and hope that I can give back sometime down the road. My psychiatrist retired and I am trying to find another one.  In the meantime, the Seroquel helps.  I’m also on 60 mg of Prozac, which I mistakenly thought was the max. I’m looking forward to getting to know you all, and am so glad this group exists. Sunny

Welcome, Sunny!  I’m glad you’re here :-)   I’m also glad Seroquel is helping.  I’m a Prozac person, too — been on various ADs (anti-depressants) for many years, and Prozac seems to be the best for me, at least for now. I take Klonopin (clonazepam) as needed for anxiety attacks. And Sally is a real peach. I’m glad she helped you find us. Best of luck to you in all matters that require luck (and what doesn’t??) Deirdre — The charter is available at: http://readystump.algebra.com/~asapm

Response:

Hi all, Please bear with me as I learn the ropes.  I just joined and was unsure of how to respond to a previous topic, so clicked on "new topic" instead. My name is Sunny, and I am the friend that Sally just posted about.  I wanted to thank those of you who replied and let you know that I am doing much better after a day on the Seroquel.

(just a little snippage) I’m looking forward to getting to know you all, and am so glad this group exists. Sunny

Welcome, Sunny!  I recently enlisted in this group and I’m really loving it. It has become one of my favorite newsgroups.  I hope you’re as happy here as I’ve become – everyone is so nice! kili — The charter is available at: http://readystump.algebra.com/~asapm

Response:

Hi all, Please bear with me as I learn the ropes.  I just joined and was unsure of how to respond to a previous topic, so clicked on "new topic" instead. My name is Sunny, and I am the friend that Sally just posted about.  I wanted to thank those of you who replied and let you know that I am doing much better after a day on the Seroquel.

<gentle snip Hi Sunny!  <waving Yes, Sally is a wonderful gal, isn’t she?  We’ve been friends for well over a year now, and we’ve *both* helped each other out tremendously.  Sally has come a long way, and I’m so proud of her.  She’s a good friend, indeed. I too am a Seroquel person.  200 mgs. each night.  I’m bi-polar, and it helps the manic part…  along with Lithium, and Lexapro.  I’ve also had the displeasure of a psych ward a few times.  It certainly isn’t fun, but sometimes necessary. Anyway, Sunny…  welcome to the group!!  Everyone here is VERY nice and helpful. I wish you well!! —

low heart rate

Question:

when you get everything else checked out, be sure they check your thyroid. Rapid hearbeat is one symptom of hyperthyroid. Have you noticed any other problems? bj

 recently I noticed that my heart rate at rest rarely goes below 90

(it used to be betweeen 60 and 70). What is this? – Hide quoted text — Show quoted text – Thanks! Dorovic a friend of gabi

Response:

Hello I am a type-1 diabetic for 28 years. My control is reasonable (last Hb A1c 7.4%) and except for more and more problems with recognizing my hypoglycemias and some microalbuminuria I am doing okay. However, recently I noticed that my heart rate at rest rarely goes below 90 (it used to be betweeen 60 and 70). What is this? Thanks! Dorovic a friend of gabi

Response:

Dorovic: I also am Type 1, 29 years.  My control also is reasonable (last HbA1c – 6.2 – however hypoglycemic unawareness seems to be creeeping up on me.  I have been running my BGs higher for the past month to try to recover quicker awareness  - my hypo feelings rarely start before about 35.) Anyway, to the heart rate thingy. Last visit to my endo – my heartrate was 120 at rest.  After 10 minutes still at 115.  He felt I was gonna need an ER visit.  I told him my heartrate has been high for about 5 to 10 years now.  Seldom under 100. Now, when I first saw this endo, I told him about a doctor I had over 5 years ago.  He did some test using a breathing type machine, (looked ancient, made mostly out of oak!) that showed I had some neuropathy from brain to heart.  He also noticed the high heartrate and also I had some heart pops.  Well, this endo laughed at that time.  Said no one had used that test in ages. And went on to belittle anything any other doctor had done or diagnosed.  He reduced my thyroid meds.  I told him I was feeling pretty good on the thyroid meds as they were.  He said (and here’s the ‘heart’ of this message.)  sometimes long term diabetics get neuropathy in the path from the brain to the heart and this can cause an increase in heartrate, and he had to reduce the thyroid meds so he could rule out that the meds may be causing the high heartrate.  At this point I reminded him of my previous doc who did the "ancient" neuropathy test that showed I may have this.  He poo-pooed and said I probably didn’t have it then. I am now shopping for a new endo or internal med.  But, long story, but maybe? Judy Type 1, 25+ years 49 years old – Hide quoted text — Show quoted text – Hello I am a type-1 diabetic for 28 years. My control is reasonable (last Hb A1c 7.4%) and except for more and more problems with recognizing my hypoglycemias and some microalbuminuria I am doing okay. However, recently I noticed that my heart rate at rest rarely goes below 90 (it used to be betweeen 60 and 70). What is this? Thanks! Dorovic a friend of gabi

Response:

What is your respiration?    Any dizzy spells from low oxygen???  Lung problems???  Boy, I think I would want to ask the doctor to go through with me all the possible causes.   Things I can think of ( in addition to thyroid/adrenals, etc.) these are hypotheticals, since I don’t have any medical training:   if your brain needs oxygen it might make you pant, as well as try to pump more blood faster.   If you have some systemic toxins… then your kidneys and liver might want more blood so as to process the toxins out…??? but certainly, more tests to find out when the fast pulse happens.  So

– Hide quoted text — Show quoted text – Hello I am a type-1 diabetic for 28 years. My control is reasonable (last Hb A1c 7.4%) and except for more and more problems with recognizing my hypoglycemias and some microalbuminuria I am doing okay. However, recently I noticed that my heart rate at rest rarely goes below 90 (it used to be betweeen 60 and 70). What is this? Thanks! Dorovic a friend of gabi

Response:

Sorry if I’m being a doomsayer, but (in my opinion) I don’t think a HbA1c of 7.4 is that good. I cannot advise you about the causes of your fast heartbeat, but suggest that you monitor your blood pressure. I believe the average recommendation for a person with diabetes is that it shouldn’t get much higher than about 130/80. I’m certain there will be wiser posters advising you on this, but the fast heart rate may also be due to some side effect of a medication you are taking or perhaps something like drinking too much coffee. Get yourself checked out by a doctor. Even an ECG might be in order. Hello I am a type-1 diabetic for 28 years. My control is reasonable (last Hb A1c 7.4%) and except for more and more problems with recognizing my hypoglycemias and some microalbuminuria I am doing okay. However, recently I noticed that my heart rate at rest rarely goes below 90 (it used to be betweeen 60 and 70). What is this? Thanks! Dorovic a friend of gabi

– Henry M. Type II, Diagnosed 1994, Melbourne, Australia

Response:

EMG and Nerve conduction done

Question:

In article <b7nvhp$2q5d…@ID-163463.news.dfncis.de

,

– Hide quoted text — Show quoted text - Sharon <noway…@hotmail.com

wrote: REP wrote: <snip Well … as I’ve mentioned, I don’t have lupus. I do have something wrong with my connective tissue. I also have severe carpal tunnel syndrome, ulnar neuropathy, tenodonitis and about a million other injuries to my right hand. CTS release surgery is NOT recommended for me, due to the problems with my connective tissue and being diabetic (I have lots of scarring in the nerve sheath, and surgery would just make the scarring – and the CTS – worse.) I strongly suggest getting at least two opinions before considering surgery. It doesn’t always help and sometimes make the problems worse. Some doctors are a little over-eager to operate. <snip That’s interesting about the scarring because when I got my gallbladder out laproscopically, I was told I wouldn’t have any scarring, but I have three huge red lumps where they cut.  Every doc that I have seen since my surgery always first thing point to my scars and say, "What’s THAT??"   I say, my surgery, and they stare for a while and say, "interesting…."   Maybe I scarred from my UCTD?

Hmm. I was thinking about internal scarring; I don’t know about incisions. Diabetics are supposed to heal poorly, yet the scars from my laproscopic tubal ligation last year are almost invisible. I do know that when my doctor opened me up, she could hardly get to my fallopian tubes due to the swelling of the connective tissue, and it complicated the surgery a great deal. I do have recurrent cellulitis in the leg with venous stasis, and the scarring from that is, well, icky. In other words, I don’t know exactly  - I just know that three of my doctors told me that whatever it is that is wrong with my connective tissue would cause the kind of scarring that would make the CTS and ulnar neuropathy a lot worse.

Response:

{{{{{Janers}}}}} Enjoy the "Show Me" state and we’ll say prayers. "Janers" <rojak…@bright.net

wrote in message

news:rzlna.3364$lf3.592452@cletus.bright.net… – Hide quoted text — Show quoted text -

Well went and had them tests today.  Also got fitted for inserts in my shoes. According to the doctor, my nerve in my spine where I HAD a diskectomy in 99 is being pinched by the SCAR tissue.  Not too bad but it is becoming such.  And there is nerve damage for sure. I also have neuropathy of the feet and hands and the test is positive for that.  He had to warm my hands and feet before he could even do that test. I told him, keep that light away as much as possible LOL In my rt leg is the damage, plus muscle wasting is evident DUH.  My feet hurt to walk but not all the time, just MOST LOL He also told me I have amild carpal tunnel on my rt hand and with my hand going numb from neuropathy that is going to be a problem also.  DUH so there are a few items we have to consider.  It is from the MCTD/Lupus that this is coming from, the neuropathy.  The nerve damage is from my back.  He said the neuro doc will not do surgery till it gets way bad, and believe me I won’t let him either LOL. I asked what he thought of acupuncture for pain, he thought that was good but no insurance will pay for that.  Really expensive here and he knows of doctors who are doing it.  Man that out of pocket would be UGH. So this is an on going thing and I have to do the best I can with it.  Get more controlled with meds and with lupus.  HELL I thought I was LOL He suggested neurotin. so anyone on it? and he did not order it, until my May blood work is back and thyroid and everything is checked. Then the rheumy is to do that. So there ya have it.  More docs and more things to contend with, but hey I am still walking and still going to have a nice Vacation in Missouri. Any more crap to throw my way?  Naw hugs to all happy trails janers

Response:

REP wrote:

<snip

In other words, I don’t know exactly  - I just know that three of my doctors told me that whatever it is that is wrong with my connective tissue would cause the kind of scarring that would make the CTS and ulnar neuropathy a lot worse.

That really stinks because it’s supposedly really helpful if you could go through with it.  :(  So sorry REP.  What do you do for your carpel tunnel other than braces and I guess ice or heat?  It’s not a pleasant thing to deal with, esp with the world moving to computerland these days.  My fiance just switched computers after buying a brand new laptop because it was causing him carpel tunnel symptoms, and he is a computer tech, so he couldn’t afford to get carpel tunnel at all.  He took a $1000 loss on his laptop just to get rid of it.  He said it was so painful and he didn’t have it, just the start of it. -Sharon — Visit my webpage: http://www.qc.edu/~sperlof1/ ~Peace~ We must come to see that peace is not merely a distant goal we seek, but it is a means by which we arrive at that goal… We must pursue peaceful ends through peaceful means.                               -Martin Luther King Jr.

Response:

In article <b7plbj$34ho…@ID-163463.news.dfncis.de

,

 Sharon <noway…@hotmail.com

wrote: REP wrote: <snip In other words, I don’t know exactly  - I just know that three of my doctors told me that whatever it is that is wrong with my connective tissue would cause the kind of scarring that would make the CTS and ulnar neuropathy a lot worse. That really stinks because it’s supposedly really helpful if you could go through with it.  

I’ve heard so many conflicting things about the surgery I’m convinced it’s a good thing I can’t have it. Anyway, I have so many injuries to this arm thay I’d still be in pain and largely unable to do much with it even if I did have the surgery.

:(  So sorry REP.  What do you do for your carpel tunnel other than braces and I guess ice or heat?  

I ca’t wear the brace for long because it make the ulnar neuropathy worse (UN is like being whacked on the funny bone all the time). I can’t take steroids (diabetes) or NSAIDs (kidney disease), but I can and do take Flexeril and Vicodin. I can’t really do heat, because of the inflammation and cold makes the nerve pain worse, so mostly I try to act like I’m real brave. I try not to use it, don’t type more than 15 minutes an hour, stuff like that.

It’s not a pleasant thing to deal with, esp with the world moving to computerland these days.  My fiance just switched computers after buying a brand new laptop because it was causing him carpel tunnel symptoms, and he is a computer tech, so he couldn’t afford to get carpel tunnel at all.  He took a $1000 loss on his laptop just to get rid of it.  He said it was so painful and he didn’t have it, just the start of it.

Mine was caused by my work, and it’s bad enough that I’m on Disability leave from work from it. In fact, when I was examined by the company doctors, they expressed amazement that I had kept working as long I had.

Response:

In article <b7mms7$2l44…@ID-163463.news.dfncis.de

,

 Sharon <noway…@hotmail.com

wrote: Janers wrote: Well went and had them tests today.  Also got fitted for inserts in my shoes. <snip Oh, and I’ve heard wonderful things IRT the carpel tunnel surgery.  Some people I know who have had it said they are no longer in any pain whatsoever, so that’s promising!  No complaints to counter it either.

Well … as I’ve mentioned, I don’t have lupus. I do have something wrong with my connective tissue. I also have severe carpal tunnel syndrome, ulnar neuropathy, tenodonitis and about a million other injuries to my right hand. CTS release surgery is NOT recommended for me, due to the problems with my connective tissue and being diabetic (I have lots of scarring in the nerve sheath, and surgery would just make the scarring – and the CTS – worse.) I strongly suggest getting at least two opinions before considering surgery. It doesn’t always help and sometimes make the problems worse. Some doctors are a little over-eager to operate. I forget the name of the surgery for the ulnar neuropathy, but I do know even that if it goes well, it is extremely painful post-surgery for a *year.* I haven’t tried neurontin – I’ve been a little put off by the scandal (the manufacturer has been pushing doctors to prescribe it to everyone for everything at very high doses) but I thik I"ll ask about it at my next visit. I can’t do braces for long – it makes the nerve damage worse – and what I take is Flexeril, which helps some.

Response:

REP wrote:

<snip

Well … as I’ve mentioned, I don’t have lupus. I do have something wrong with my connective tissue. I also have severe carpal tunnel syndrome, ulnar neuropathy, tenodonitis and about a million other injuries to my right hand. CTS release surgery is NOT recommended for me, due to the problems with my connective tissue and being diabetic (I have lots of scarring in the nerve sheath, and surgery would just make the scarring – and the CTS – worse.) I strongly suggest getting at least two opinions before considering surgery. It doesn’t always help and sometimes make the problems worse. Some doctors are a little over-eager to operate.

<snip

That’s interesting about the scarring because when I got my gallbladder out laproscopically, I was told I wouldn’t have any scarring, but I have three huge red lumps where they cut.  Every doc that I have seen since my surgery always first thing point to my scars and say, "What’s THAT??"   I say, my surgery, and they stare for a while and say, "interesting…."   Maybe I scarred from my UCTD? -Sharon — Visit my webpage: http://www.qc.edu/~sperlof1/ ~Peace~ We must come to see that peace is not merely a distant goal we seek, but it is a means by which we arrive at that goal… We must pursue peaceful ends through peaceful means.                               -Martin Luther King Jr.

Response:

Madison,  so glad that you posted a reply to Janers!  Doesn’t matter to us if your "s" sticks….please post and we will ignore the sticking letter. Hugs, Sherry <LR…@webtv.net

wrote in message

news:635-3E9E85E4-113@storefull-2273.public.lawson.webtv.net… – Hide quoted text — Show quoted text -

hi janers, i’m on neurontin and it has helped a lot!  my pcp put me on it in dec because i wasn’t sleeping due to so much pain.  boy do i get a good night sleep now!   i’m only on 600 mg right now but the dose is being increased since i’m starting to have a lot of pain in my legs again.  i have peripheral neuropathy from mid shin down.  lots of burning and numbness in my legs and feet.  my advice is to start this med very slowly because you can  feel very groggy from it.  but after a few days your body will adjust.   hope this helps.  madison (who doesn’t post because the letter s on my keyboard sssssticks!!)

Response:

Janers wrote:

Well went and had them tests today.  Also got fitted for inserts in my shoes.

<snip

(((Janers)))) That’s a heck of a lot on your plate!  Do you know Rosie from AMF and ASA?  She’s on neurontin and lovin’ it.  I tried it a few years ago, before my symptoms were this bad, and it didn’t do anything for me, but maybe things are different now with my new symptoms.  Good luck with it! Oh, and I’ve heard wonderful things IRT the carpel tunnel surgery.  Some people I know who have had it said they are no longer in any pain whatsoever, so that’s promising!  No complaints to counter it either. -Sharon — Visit my webpage: http://www.qc.edu/~sperlof1/ ~Peace~ We must come to see that peace is not merely a distant goal we seek, but it is a means by which we arrive at that goal… We must pursue peaceful ends through peaceful means.                               -Martin Luther King Jr.

Response:

Well went and had them tests today.  Also got fitted for inserts in my shoes. According to the doctor, my nerve in my spine where I HAD a diskectomy in 99 is being pinched by the SCAR tissue.  Not too bad but it is becoming such.  And there is nerve damage for sure. I also have neuropathy of the feet and hands and the test is positive for that.  He had to warm my hands and feet before he could even do that test. I told him, keep that light away as much as possible LOL In my rt leg is the damage, plus muscle wasting is evident DUH.  My feet hurt to walk but not all the time, just MOST LOL He also told me I have amild carpal tunnel on my rt hand and with my hand going numb from neuropathy that is going to be a problem also.  DUH so there are a few items we have to consider.  It is from the MCTD/Lupus that this is coming from, the neuropathy.  The nerve damage is from my back.  He said the neuro doc will not do surgery till it gets way bad, and believe me I won’t let him either LOL. I asked what he thought of acupuncture for pain, he thought that was good but no insurance will pay for that.  Really expensive here and he knows of doctors who are doing it.  Man that out of pocket would be UGH. So this is an on going thing and I have to do the best I can with it.  Get more controlled with meds and with lupus.  HELL I thought I was LOL He suggested neurotin. so anyone on it? and he did not order it, until my May blood work is back and thyroid and everything is checked. Then the rheumy is to do that. So there ya have it.  More docs and more things to contend with, but hey I am still walking and still going to have a nice Vacation in Missouri. Any more crap to throw my way?  Naw hugs to all happy trails janers

Response:

Aieee. EMG — I cringe at the thought; for me, it was pure torture, on highly inflammed muscles. Hope yours went okay… Grace. p.s. Is neuropathy a symptom of Lupus? How common is it? I don’t have it, but I remember getting stuck with the pins and rolled over with the pizza cutters, during hospital tests… – Hide quoted text — Show quoted text -Janers wrote:

Well went and had them tests today.  Also got fitted for inserts in my shoes.

Response:

Janers, I was taking the neurontin and it helped with the nerve pain.  My sister, a diabetic, has been taking it for yrs for her "diabetic neuropathy.  She was really happy for me when I started taking it. (((((((Janers)))))))) Sherry "Janers" <rojak…@bright.net

wrote in message

news:rzlna.3364$lf3.592452@cletus.bright.net… – Hide quoted text — Show quoted text -

Well went and had them tests today.  Also got fitted for inserts in my shoes. According to the doctor, my nerve in my spine where I HAD a diskectomy in 99 is being pinched by the SCAR tissue.  Not too bad but it is becoming such.  And there is nerve damage for sure. I also have neuropathy of the feet and hands and the test is positive for that.  He had to warm my hands and feet before he could even do that test. I told him, keep that light away as much as possible LOL In my rt leg is the damage, plus muscle wasting is evident DUH.  My feet hurt to walk but not all the time, just MOST LOL He also told me I have amild carpal tunnel on my rt hand and with my hand going numb from neuropathy that is going to be a problem also.  DUH so there are a few items we have to consider.  It is from the MCTD/Lupus that this is coming from, the neuropathy.  The nerve damage is from my back.  He said the neuro doc will not do surgery till it gets way bad, and believe me I won’t let him either LOL. I asked what he thought of acupuncture for pain, he thought that was good but no insurance will pay for that.  Really expensive here and he knows of doctors who are doing it.  Man that out of pocket would be UGH. So this is an on going thing and I have to do the best I can with it.  Get more controlled with meds and with lupus.  HELL I thought I was LOL He suggested neurotin. so anyone on it? and he did not order it, until my May blood work is back and thyroid and everything is checked. Then the rheumy is to do that. So there ya have it.  More docs and more things to contend with, but hey I am still walking and still going to have a nice Vacation in Missouri. Any more crap to throw my way?  Naw hugs to all happy trails janers

Response:

hi janers, i’m on neurontin and it has helped a lot!  my pcp put me on it in dec because i wasn’t sleeping due to so much pain.  boy do i get a good night sleep now!   i’m only on 600 mg right now but the dose is being increased since i’m starting to have a lot of pain in my legs again.  i have peripheral neuropathy from mid shin down.  lots of burning and numbness in my legs and feet.  my advice is to start this med very slowly because you can  feel very groggy from it.  but after a few days your body will adjust.   hope this helps.  madison (who doesn’t post because the letter s on my keyboard sssssticks!!)

Response:

Hi Janers, I am on neurontin. It seems to help my neuropathy, at least it does when it is not too severe. I am only on 1200mgs, and I can increase if need be. I try to stay on the lowest possible dose. It gives me room to go up, if necessary. Certainly worth a try for you. BJ-Sk. Canada "Janers" <rojak…@bright.net

wrote in message

news:rzlna.3364$lf3.592452@cletus.bright.net… – Hide quoted text — Show quoted text -

Well went and had them tests today.  Also got fitted for inserts in my shoes. According to the doctor, my nerve in my spine where I HAD a diskectomy in 99 is being pinched by the SCAR tissue.  Not too bad but it is becoming such.  And there is nerve damage for sure. I also have neuropathy of the feet and hands and the test is positive for that.  He had to warm my hands and feet before he could even do that test. I told him, keep that light away as much as possible LOL In my rt leg is the damage, plus muscle wasting is evident DUH.  My feet hurt to walk but not all the time, just MOST LOL He also told me I have amild carpal tunnel on my rt hand and with my hand going numb from neuropathy that is going to be a problem also.  DUH so there are a few items we have to consider.  It is from the MCTD/Lupus that this is coming from, the neuropathy.  The nerve damage is from my back.  He said the neuro doc will not do surgery till it gets way bad, and believe me I won’t let him either LOL. I asked what he thought of acupuncture for pain, he thought that was good but no insurance will pay for that.  Really expensive here and he knows of doctors who are doing it.  Man that out of pocket would be UGH. So this is an on going thing and I have to do the best I can with it.  Get more controlled with meds and with lupus.  HELL I thought I was LOL He suggested neurotin. so anyone on it? and he did not order it, until my May blood work is back and thyroid and everything is checked. Then the rheumy is to do that. So there ya have it.  More docs and more things to contend with, but hey I am still walking and still going to have a nice Vacation in Missouri. Any more crap to throw my way?  Naw hugs to all happy trails janers

Response:

Raynauds?

Question:

i have always thought maybe i had raynauds, but could never be sure because i can’t tell if it’s that, or the difficulties that i have with my heart. is there any way to tell? or does it matter? Analog Machine (bad valentine)

Response:

I have had Raynaud’s since… Gosh! I don’t remember when I DIDN’T have it. Anyway, my main problem is with my feet. I have no motor control in my legs so I can’t move them to get the blood flowing and sitting in this chair lets them get cold easily. I wear nice thick warm socks with soft, thick booties over them but they STILL manage to get cold. When they do, they go numb. Totally numb. Anyone have this prob? Any solutions? Thanks. Krystie Rose

Response:

I have some peripheral neuropathy from vasculitis which makes my feet and rt. hand tingle.  They’re ok in the morning, but when I’m on my feet, and when I get fatigued, it comes on.  Feet and hands feel cold sometimes though they are not.. it just the nerves responding to lack of oxygen.   It is not Raynauds because the blood flow seems to be not restricted in major vessels. I’ve heard of people taking neurontin for the problem, but haven’t looked into it myself.

Response:

In article <36e93…@news.greatbasin.net

, B-BALL <jo…@wrpm.com wrote: Hi everyone, I have not written in awhile!  I have noticed alot of people speaking of Raynauds?  My doctor can not seem to give me anything that will help with the red, blue, swollen and itchy fingers.  The only thing he has given me is an ointment, and I have to put it on and wear gloves.  I wear gloves during the day and have a portable heater next to my desk to try and keep my extremities warm.  If any one has a suggestion I love to hear it.

You can try a drug that’s a vasodilator (this sounds like a "duh" but a lot of doctors don’t seem to think Reynaud’s is serious or painful enough to warrant drug therapy).  I’m currently on Atarax for my hellacious allergies, with the nice side effect of it helping the Reynaud’s. We tried some of the other "less sedating" antihistamines, but they’re not vasodilators and we found I started having a lot more hand and foot pain while on them instead of the Atarax.  We think that some of my "oh no, *everything* itches" reactions are more directly related to the Reynaud’s than the allergies or the lupus.  When the lupus was in full gear, the Atarax did zilch for skin itches.  Now that my prominent symptom is joint pain and the Reynaud’s, it helps.   The other thing I tried the last two winters is ginger root.  Taking a large dose will give you a nice flush.  And I found that rubbing a ginger ointment on my feet before I went to bed meant that I didn’t feel like I was freezing all night.  I used the same ointment on my hands when I was busking on the street at Christmas.  Since I can’t play flute worth $!#@ when the Reynaud’s is acting up, I’d say it was a success. — Lee M.Thompson-Herbert        KD6WUR                  l…@crl.com Member, Knights of Xenu (1995).  Chaos Monger and Jill of All Trades. "There are some people who will argue whether the flames are blue or green, when the real question is that their arse is on fire."

Response:

Hi Joele, my Raynaud’s started when I was only 16 or 17 yo so I know what you are going through – I’ve had it for over 30 yrs now.  Back then, docs told me to wear gloves in the winter time (duh…) but I found that wasn’t enough.  If you can catch it when it first starts, hold your arms out and do little circles with them (isometric exercises is what they used to call this in gym class). Of course, everyone is different, but that helped me a lot if I didn’t let my fingers go completely blanched (numb) before starting it.  Also, be careful of getting too warm as well.  Since I moved to Tampa from Colorado 1-1/2 yrs ago I found that heat is just as excrutiatingly painful as the cold.  And another thing, be really careful with keeping your feet warm and dry — Raynauds can affect your feet, too.  You can check out the Raynauds Foundation at ttp://members.aol.com/Raynauds/index.htm; they have some good info, too.  Hang in there, hope this helps a little. Paulette in Tampa

Response:

Hi everyone, I have not written in awhile!  I have noticed alot of people speaking of Raynauds?  My doctor can not seem to give me anything that will help with the red, blue, swollen and itchy fingers.  The only thing he has given me is an ointment, and I have to put it on and wear gloves.  I wear gloves during the day and have a portable heater next to my desk to try and keep my extremities warm.  If any one has a suggestion I love to hear it. Thanks everyone! I love this group and it is nice to know that you are not the only one out there experiencing this disease. Joele

Response:

I had a terrible time with Raynauds until the RD put me on prednisone and MTX. Now I only have occassional episodes.

Response:

An exaserbation question

Question:

I agree with Paul here, too. Steroids are pretty brutal. I’m not afraid of them, I’ve had several steroid treatments, but reserved for optic neuritis only. For me, steroids work quickly on that front. But in any event, they don’t change the "course of the disease." They can, however, change the course of the exacerbation — maybe. Good luck.

Dagal23 wrote: " EXACTLY!!!  Now this makes it much easier.  I don’t want

to take the steroids if they aren’t going to do anything to help in the course of the disease.  It sort of reminds me of my situation with Neurontin. My doc wanted me to take it for nerve pain. Started taking it and lost my sense of balance pretty badly. Doc said to keep taking it that I’d get used to it.  I did.  I got my sense of balance back.  After a few weeks I started having blinding headaches. Doc said it’s a side effect of the Neurontin and wanted to prescribe something for the headaches.  I told him to forget it, I’d deal with the nerve pain." <

Response:

Paul, Do you have any studies or info on the long term effects of low dose oral steroids. I used them on and off for over 8 years….when they tried iv solumedrol, i went to sleep, had worse steroidal acne(that a nurse actually told me to put cortisone cream on…..loser) and basically no benefits from them whatso ever. I hypothesize….8 years of continued low dose steroids have made me immune to the possible good effects of steroids.  make any sense? I also attribute rapid weight loss to the discontinuing of steroids.  After totally quitting in Dec 2000, by July 2000 I was back to pre pregnancy weight of 120-125….I have no explanation for this other than the fact I quit steroids and my body has adjusted to it’s normal weight.  Being 5ft 5inches tall, 120-125 is a perfect weight according to the weight Vs height frame size calculations. — Take Care : ) JulieD We could learn a lot from crayons: some are sharp, some are pretty, some are dull, some need to hold a sign some have weird names, and all are different colors…. but they all have to learn to live in the same box. "Paul Jones" <Paul_Jo…@btinternet.com

wrote in message

news:3B5FE7AF.FBCB6FF@btinternet.com…

Hi Tee, Long-term use of corticosteroids isn’t good. Why? You PPMS right? I didn’t think corticosteroids were appropriate for any phase of MS except relapses during the RRMS phase. I would ask your neuro some serious questions if you’re taking them for MS. From:

http://www.nlm.nih.gov/medlineplus/druginfo/corticosteroidsglucocorti… 2018.html#SXX20 – Hide quoted text — Show quoted text -

Side Effects of This Medicine Corticosteroids may lower your resistance to infections. Also, any infection you get may be harder to treat. Always check with your doctor as soon as possible if you notice any signs of a possible infection, such as sore throat, fever, sneezing, or coughing. Along with its needed effects, a medicine may cause some unwanted effects. Although not all of these side effects may occur, if they do occur they may need medical attention. When this medicine is used for short periods of time, side effects usually are rare. However, check with your doctor as soon as possible if any of the following side effects occur: Less common Decreased or blurred vision; frequent urination; increased thirst Rare Blindness (sudden, when injected in the head or neck area); burning, numbness, pain, or tingling at or near place of injection; confusion; excitement; false sense of well-being; hallucinations (seeing, hearing, or feeling things that are not there); mental depression; mistaken feelings of self-importance or being mistreated; mood swings (sudden and wide); redness, swelling, or other sign of allergy or infection at place of injection; restlessness; skin rash or hives Additional side effects may occur if you take this medicine for a long time. Check with your doctor if any of the following side effects occur: Abdominal or stomach pain or burning (continuing); acne; bloody or black, tarry stools; changes in vision; eye pain; filling or rounding out of the face; headache; irregular heartbeat; menstrual problems; muscle cramps or pain; muscle weakness; nausea; pain in arms, back, hips, legs, ribs, or shoulders; pitting, scarring, or depression of skin at place of injection; reddish purple lines on arms, face, groin, legs, or trunk; redness of eyes; sensitivity of eyes to light; stunting of growth (in children); swelling of feet or lower legs; tearing of eyes; thin, shiny skin; trouble in sleeping; unusual bruising; unusual increase in hair growth; unusual tiredness or weakness; vomiting; weight gain (rapid); wounds that will not heal Other side effects may occur that usually do not need medical attention. These side effects may go away during treatment as your body adjusts to the medicine. However, check with your doctor if any of the following side effects continue or are bothersome: More common Increased appetite; indigestion; loss of appetite (for triamcinolone only); nervousness or restlessness Less common or rare Darkening or lightening of skin color; dizziness or lightheadedness; flushing of face or cheeks; hiccups; increased joint pain (after injection into a joint); increased sweating; nosebleeds (after injection into the nose); sensation of spinning After you stop using this medicine, your body may need time to adjust . The length of time this takes depends on the amount of medicine you were using and how long you used it. If you have taken large doses of this medicine for a long time, your body may need one year to adjust. During this time, check with your doctor immediately if any of the following side effects occur : Abdominal, stomach, or back pain; dizziness; fainting; fever; loss of appetite (continuing); muscle or joint pain; nausea; reappearance of disease symptoms; shortness of breath; unexplained headaches (frequent or continuing); unusual tiredness or weakness; vomiting; weight loss (rapid) Other side effects not listed above may also occur in some patients. If you notice any other effects, check with your doctor. Revised: 06/27/2000 ——————– Take care, Paul All About MS – the latest MS News and Views http://www.mult-sclerosis.org/ Tee wrote: Michael, Paul & Ed, Can ya’ll tell me what these side effects (long lasting) are in Steroid

use?

I’m on a 1gm monthly dose of IV Solumedrol.  Paul said that Ed has a

list… > > can you post it, Ed? > > Thanks!  :o) > > Hugs, > > Tee > > "Michael" <muirh…@island.net

wrote in message

> > news:9jo1us$k3gd$1@ID-78693.news.dfncis.de… > > "Dagal23" <daga…@aol.com

wrote in message

> > news:20010725223712.22291.00001124@ng-ms1.aol.com… > > > I’ve been having problems with my left forearm.  I feel like I’ve hit my

funnybone, but not the immediate feeling you get when you do it, but

that

lingering feeling of having bumped it.  Sort of numb-ish, or like the nerve is irritated or something.  I just can’t explain it. Hiya Sue… Whatcha got there is a paraesthesia.   Changed sensation, possibly

secondary

to a new (or old but freshly inflammed) MS lesion. I had something similar during my first MS exacerbation, but for me it

was

as if I was wearing a long glove made of that pins-and-needles feeling you get after your arm’s been asleep and is waking up agin.    I could feel everything just fine, I could even play guitar, recorder and pennywhistle the same as ever… I just felt like I was doing it while wearing a pins-and-needles glove. *Weird*. It wouldn’t be a bad idea to call your doctor and get help in

eliminating

other possible causes for the problem (peripheral neuropathy from diabetes can

do

this, for example,) but even if it’s new MS activity, I’d be very

hesitant

to use steroids unless the feeling is something you can’t tolerate. Steroids come with a whole set of potentially horrid side effects, and

they

do nothing to change the outcome of MS exacerbations.   They *can* speed

them

along some.   This can be of great benefit if an exacerbation has you blinded, paralysed or otherwise seriously impaired, but they can’t make the "leftovers" (if there are any) from that exacerbation any less of a nuisance. Personally, I think steroids are *very* potent medicine to be using for anything that doesn’t threaten to ruin your life.   Sorta like firing a cannon

across

your livingroom to swat a fly that’s bothering the cat. Either way, keep in touch about it, huh? —           ((((((((((U)))))))))) Michael <muirh…@island.net    -=| Livin’ on Island Time |=-

Response:

Sue, hi. I agree with all the others re the steroids.  What you’re feeling doesn’t necessarily have to do with a current exacerbation, tho. For about the past 10 or so years, I’ve had a sensation like what you’re describing, and it’s all the time. Left over from my flare in 91, I imagine.  I call it "feeling like I have paraffin all over me". Tingly but kind of numb. I can feel it if you stick me with a pin, but don’t hand me something and expect me to be able to tell you whether it’s velvet or sandpaper.  It drives you crazy at first, but eventually, eventually, eventually, you get used to it! Shirl "Dagal23" <daga…@aol.com

wrote in message

news:20010725223712.22291.00001124@ng-ms1.aol.com… – Hide quoted text — Show quoted text -

I’ve been having problems with my left forearm.  I feel like I’ve hit my funnybone, but not the immediate feeling you get when you do it, but that lingering feeling of having bumped it.  Sort of numb-ish, or like the

nerve is

irritated or something.  I just can’t explain it.  I first had the feeling

a

couple of months ago, it lasted a couple of days, went away, came back for

a

couple of days, and now I’ve had it for several days now.  Should I call

my

doctor?  I don’t know what I’m supposed to be doing.  Even if I call my

doctor,

would it accomplish anything since I’m on Copaxone anyway?  I’ve read

where

steroids can help exaserbations, but not knowing if it’s an exaserbation

has me

in a quandry.  If it is, and he wants to put me on steroids, does it

actually

help the course of the disease or does it just help the symptoms? Sue

Response:

Hi Sue! <<  I’ve read where steroids can help exaserbations, but not knowing if it’s an exaserbation has me in a quandry.  If it is, and he wants to put me on steroids, does it actually help the course of the disease or does it just help the symptoms?  

This  "funnybone"  type feeling  in your forearm doesn’t sound like an attack; it just sound like the MS acting up a bit. I don’t use steroids unless I’m getting to the point where I can’t transfer. They’re pretty nasty, as others have told you, but they always pull me out of an  attack.  But everyone is different; some people are not  helped at all. And they don’t help with the course of the disease; that’s what Copaxone is supposed to do.   I have lots of MS symptoms like this that come and go.  This sounds like one of mine.  Just part of the fun MS experience! Take care! Sylvia

Response:

This  "funnybone"  type feeling  in your forearm doesn’t sound like an attack; it just sound like the MS acting up a bit.

Well now I’m having buzzing sensations in the roof of my mouth, near the back on the left side and in the front directly behind my two front teeth.  I wonder if at any moment I will just have a complete meltdown.   Sorry to bitch about this, and I feel kind of silly considering many of you have much more serious problems with MS than I do, but I just hate this.  I think I’m mostly scared.   Sue

Response:

dont feel silly sue. when your body is pulling a "freak show" on you as i call it, it is terrifying. you never know what is coming next. breathe deep. get a lot of rest. if it keeps up, call the doc.

Sorry to bitch about this, and I feel kind of silly considering many of you have much more serious problems with MS than I do, but I just hate this. I think I’m mostly scared.   Sue

Be Well, Lisa to send email, remove 123 from my address. "Please explain to me the scientific nature of ‘The Whammy’" – Scully "The Daily News asks her for the dope. She says, ‘Man, the dope’s that there’s still hope.’"- Springsteen

Response:

Michael, Paul & Ed, Can ya’ll tell me what these side effects (long lasting) are in Steroid use? I’m on a 1gm monthly dose of IV Solumedrol.  Paul said that Ed has a list… can you post it, Ed? Thanks!  :o) Hugs, Tee "Michael" <muirh…@island.net

wrote in message

news:9jo1us$k3gd$1@ID-78693.news.dfncis.de… "Dagal23" <daga…@aol.com

wrote in message

news:20010725223712.22291.00001124@ng-ms1.aol.com…

I’ve been having problems with my left forearm.  I feel like I’ve hit my funnybone, but not the immediate feeling you get when you do it, but that lingering feeling of having bumped it.  Sort of numb-ish, or like the

nerve is

irritated or something.  I just can’t explain it.

Hiya Sue… Whatcha got there is a paraesthesia.   Changed sensation, possibly secondary to a new (or old but freshly inflammed) MS lesion. I had something similar during my first MS exacerbation, but for me it was as if I was wearing a long glove made of that pins-and-needles feeling you get after your arm’s been asleep and is waking up agin.    I could feel everything just fine, I could even play guitar, recorder and pennywhistle the same as ever… I just felt like I was doing it while wearing a pins-and-needles glove. *Weird*. It wouldn’t be a bad idea to call your doctor and get help in eliminating other possible causes for the problem (peripheral neuropathy from diabetes can do this, for example,) but even if it’s new MS activity, I’d be very hesitant to use steroids unless the feeling is something you can’t tolerate. Steroids come with a whole set of potentially horrid side effects, and they do nothing to change the outcome of MS exacerbations.   They *can* speed them along some.   This can be of great benefit if an exacerbation has you blinded, paralysed or otherwise seriously impaired, but they can’t make the "leftovers" (if there are any) from that exacerbation any less of a nuisance. Personally, I think steroids are *very* potent medicine to be using for anything that doesn’t threaten to ruin your life.   Sorta like firing a cannon across your livingroom to swat a fly that’s bothering the cat. Either way, keep in touch about it, huh? —           ((((((((((U)))))))))) Michael <muirh…@island.net

   -=| Livin’ on Island Time |=-

Response:

Hi Tee, Long-term use of corticosteroids isn’t good. Why? You PPMS right? I didn’t think corticosteroids were appropriate for any phase of MS except relapses during the RRMS phase. I would ask your neuro some serious questions if you’re taking them for MS. From: http://www.nlm.nih.gov/medlineplus/druginfo/corticosteroidsglucocorti… Side Effects of This Medicine Corticosteroids may lower your resistance to infections. Also, any infection you get may be harder to treat. Always check with your doctor as soon as possible if you notice any signs of a possible infection, such as sore throat, fever, sneezing, or coughing. Along with its needed effects, a medicine may cause some unwanted effects. Although not all of these side effects may occur, if they do occur they may need medical attention. When this medicine is used for short periods of time, side effects usually are rare. However, check with your doctor as soon as possible if any of the following side effects occur: Less common Decreased or blurred vision; frequent urination; increased thirst Rare Blindness (sudden, when injected in the head or neck area); burning, numbness, pain, or tingling at or near place of injection; confusion; excitement; false sense of well-being; hallucinations (seeing, hearing, or feeling things that are not there); mental depression; mistaken feelings of self-importance or being mistreated; mood swings (sudden and wide); redness, swelling, or other sign of allergy or infection at place of injection; restlessness; skin rash or hives Additional side effects may occur if you take this medicine for a long time. Check with your doctor if any of the following side effects occur: Abdominal or stomach pain or burning (continuing); acne; bloody or black, tarry stools; changes in vision; eye pain; filling or rounding out of the face; headache; irregular heartbeat; menstrual problems; muscle cramps or pain; muscle weakness; nausea; pain in arms, back, hips, legs, ribs, or shoulders; pitting, scarring, or depression of skin at place of injection; reddish purple lines on arms, face, groin, legs, or trunk; redness of eyes; sensitivity of eyes to light; stunting of growth (in children); swelling of feet or lower legs; tearing of eyes; thin, shiny skin; trouble in sleeping; unusual bruising; unusual increase in hair growth; unusual tiredness or weakness; vomiting; weight gain (rapid); wounds that will not heal Other side effects may occur that usually do not need medical attention. These side effects may go away during treatment as your body adjusts to the medicine. However, check with your doctor if any of the following side effects continue or are bothersome: More common Increased appetite; indigestion; loss of appetite (for triamcinolone only); nervousness or restlessness Less common or rare Darkening or lightening of skin color; dizziness or lightheadedness; flushing of face or cheeks; hiccups; increased joint pain (after injection into a joint); increased sweating; nosebleeds (after injection into the nose); sensation of spinning After you stop using this medicine, your body may need time to adjust . The length of time this takes depends on the amount of medicine you were using and how long you used it. If you have taken large doses of this medicine for a long time, your body may need one year to adjust. During this time, check with your doctor immediately if any of the following side effects occur : Abdominal, stomach, or back pain; dizziness; fainting; fever; loss of appetite (continuing); muscle or joint pain; nausea; reappearance of disease symptoms; shortness of breath; unexplained headaches (frequent or continuing); unusual tiredness or weakness; vomiting; weight loss (rapid) Other side effects not listed above may also occur in some patients. If you notice any other effects, check with your doctor. Revised: 06/27/2000 ——————– Take care, Paul All About MS – the latest MS News and Views http://www.mult-sclerosis.org/ – Hide quoted text — Show quoted text -Tee wrote:

Michael, Paul & Ed, Can ya’ll tell me what these side effects (long lasting) are in Steroid use? I’m on a 1gm monthly dose of IV Solumedrol.  Paul said that Ed has a list… can you post it, Ed? Thanks!  :o) Hugs, Tee "Michael" <muirh…@island.net wrote in message news:9jo1us$k3gd$1@ID-78693.news.dfncis.de… "Dagal23" <daga…@aol.com wrote in message news:20010725223712.22291.00001124@ng-ms1.aol.com… I’ve been having problems with my left forearm.  I feel like I’ve hit my funnybone, but not the immediate feeling you get when you do it, but that lingering feeling of having bumped it.  Sort of numb-ish, or like the nerve is irritated or something.  I just can’t explain it. Hiya Sue… Whatcha got there is a paraesthesia.   Changed sensation, possibly secondary to a new (or old but freshly inflammed) MS lesion. I had something similar during my first MS exacerbation, but for me it was as if I was wearing a long glove made of that pins-and-needles feeling you get after your arm’s been asleep and is waking up agin.    I could feel everything just fine, I could even play guitar, recorder and pennywhistle the same as ever… I just felt like I was doing it while wearing a pins-and-needles glove. *Weird*. It wouldn’t be a bad idea to call your doctor and get help in eliminating other possible causes for the problem (peripheral neuropathy from diabetes can do this, for example,) but even if it’s new MS activity, I’d be very hesitant to use steroids unless the feeling is something you can’t tolerate. Steroids come with a whole set of potentially horrid side effects, and they do nothing to change the outcome of MS exacerbations.   They *can* speed them along some.   This can be of great benefit if an exacerbation has you blinded, paralysed or otherwise seriously impaired, but they can’t make the "leftovers" (if there are any) from that exacerbation any less of a nuisance. Personally, I think steroids are *very* potent medicine to be using for anything that doesn’t threaten to ruin your life.   Sorta like firing a cannon across your livingroom to swat a fly that’s bothering the cat. Either way, keep in touch about it, huh? —           ((((((((((U)))))))))) Michael <muirh…@island.net    -=| Livin’ on Island Time |=-

Response:

"Dagal23" <daga…@aol.com

wrote in message

news:20010725223712.22291.00001124@ng-ms1.aol.com…

I’ve been having problems with my left forearm.  I feel like I’ve hit my funnybone, but not the immediate feeling you get when you do it, but that lingering feeling of having bumped it.  Sort of numb-ish, or like the nerve is irritated or something.  I just can’t explain it.

Hiya Sue… Whatcha got there is a paraesthesia.   Changed sensation, possibly secondary to a new (or old but freshly inflammed) MS lesion. I had something similar during my first MS exacerbation, but for me it was as if I was wearing a long glove made of that pins-and-needles feeling you get after your arm’s been asleep and is waking up agin.    I could feel everything just fine, I could even play guitar, recorder and pennywhistle the same as ever… I just felt like I was doing it while wearing a pins-and-needles glove. *Weird*. It wouldn’t be a bad idea to call your doctor and get help in eliminating other possible causes for the problem (peripheral neuropathy from diabetes can do this, for example,) but even if it’s new MS activity, I’d be very hesitant to use steroids unless the feeling is something you can’t tolerate. Steroids come with a whole set of potentially horrid side effects, and they do nothing to change the outcome of MS exacerbations.   They *can* speed them along some.   This can be of great benefit if an exacerbation has you blinded, paralysed or otherwise seriously impaired, but they can’t make the "leftovers" (if there are any) from that exacerbation any less of a nuisance. Personally, I think steroids are *very* potent medicine to be using for anything that doesn’t threaten to ruin your life.   Sorta like firing a cannon across your livingroom to swat a fly that’s bothering the cat. Either way, keep in touch about it, huh? —           ((((((((((U)))))))))) Michael <muirh…@island.net

   -=| Livin’ on Island Time |=-

Response:

Dagal23 wrote:

I’ve been having problems with my left forearm.  I feel like I’ve hit my funnybone, but not the immediate feeling you get when you do it, but that lingering feeling of having bumped it.  Sort of numb-ish, or like the nerve is irritated or something.  I just can’t explain it.  I first had the feeling a couple of months ago, it lasted a couple of days, went away, came back for a couple of days, and now I’ve had it for several days now.  Should I call my doctor?  I don’t know what I’m supposed to be doing.  Even if I call my doctor, would it accomplish anything since I’m on Copaxone anyway?  I’ve read where steroids can help exaserbations, but not knowing if it’s an exaserbation has me in a quandry.  If it is, and he wants to put me on steroids, does it actually help the course of the disease or does it just help the symptoms? Sue

I’m not a doctor but … I’d think hard about steroids if I were you. They have pretty nasty side-effects (psychological effects, weight gain and lots more – check with Ed for the full list). Studies have shown that they don’t make any difference to the disease course in the long-term. They do shorten exacerbations but that might be only a matter of a few weeks difference before you recover that amount anyway. If you can live with this elbow stuff (sounds like something called paraethesia – altered sensation) then I would if I were you. If it doesn’t get better then the likelihood is that it wouldn’t have anyway. Take care, Paul All About MS – the latest MS News and Views http://www.mult-sclerosis.org/

Response:

I’d think hard about steroids if I were you. They have pretty nasty side-effects (psychological effects, weight gain and lots more – check with Ed for the full list). Studies have shown that they don’t make any difference to the disease course in the long-term.

EXACTLY!!!  Now this makes it much easier.  I don’t want to take the steroids if they aren’t going to do anything to help in the course of the disease.  It sort of reminds me of my situation with Neurontin. My doc wanted me to take it for nerve pain. Started taking it and lost my sense of balance pretty badly. Doc said to keep taking it that I’d get used to it.  I did.  I got my sense of balance back.  After a few weeks I started having blinding headaches. Doc said it’s a side effect of the Neurontin and wanted to prescribe something for the headaches.  I told him to forget it, I’d deal with the nerve pain.   Sue

Response:

I’ve been having problems with my left forearm.  I feel like I’ve hit my funnybone, but not the immediate feeling you get when you do it, but that lingering feeling of having bumped it.  Sort of numb-ish, or like the nerve is irritated or something.  I just can’t explain it.  I first had the feeling a couple of months ago, it lasted a couple of days, went away, came back for a couple of days, and now I’ve had it for several days now.  Should I call my doctor?  I don’t know what I’m supposed to be doing.  Even if I call my doctor, would it accomplish anything since I’m on Copaxone anyway?  I’ve read where steroids can help exaserbations, but not knowing if it’s an exaserbation has me in a quandry.  If it is, and he wants to put me on steroids, does it actually help the course of the disease or does it just help the symptoms?   Sue

Response:

Finger Numbness?

Question:

My index finger has been having a sharp pain at the first joint and has lost some of it’s feeling. Has any of you had the same problem? Terry

Response:

I’ve never had the pain thing… but my finger tips have been numb since my first exacerbation over a year ago… macj…@yahoo.com On 26 Dec 1999 23:20:00 GMT, tlover…@aol.com (TLOverton) wrote: – Hide quoted text — Show quoted text -

My index finger has been having a sharp pain at the first joint and has lost some of it’s feeling. Has any of you had the same problem? Terry

Response:

Hi Terry, As I write this, my thumb is numb. There is also a dull pain occasionally. My big toes have also been getting numb. The numbness creeped up my whole left side last night, but has abated. My thumb is the thing that’s making me a little nuts right now. It’s been numb to varying degrees for the last few days (with some intermittant pain). I hope your numbness stops soon (mine too :o )). Take care, Tisha TLOverton <tlover…@aol.com

wrote in message

news:19991226182000.01591.00001530@ng-cg1.aol.com… – Hide quoted text — Show quoted text -

My index finger has been having a sharp pain at the first joint and has

lost

some of it’s feeling. Has any of you had the same problem? Terry

Response:

Terry: all my fingers are numb all the time. It’s no big thing. Good Holidays.   Gerry At 11:20 PM 26-12-1999 GMT, you wrote: – Hide quoted text — Show quoted text -

My index finger has been having a sharp pain at the first joint and has lost some of it’s feeling. Has any of you had the same problem? Terry

Response:

Hi Terry, I get sharp pains in my fingers and toes off and on.  For years I have had numbness in my second and third to the last toes whenever I wear shoes for too long a time.  Then the cramping goes up my foot into my leg and always in my left foot never the right.  Then again most of my symptoms are confined to the left side.   The pain I experience though actually makes me wince it is so sharp and only lasts for a split second or two. My best to you, Carol

Response:

My index finger has been having a sharp pain at the first joint and has lost

some of it’s feeling. Has any of you had the same problem?<< Terry, All the time!  All of my finger tips go sumb on a daily basis, as well as my toes and *heels, of all things!  I *does seem worse (for me) in the winter, although I *adore the cold! Best, Judith ~~~~~~~~~~~~~~~~~~~~~ "If we knew what we were doing, it would not be called research, would it?"                                             —Albert Einstein ~~~~~~~~~~~~~~~~~~~~~

Response:

Terry…not all of our aches and pains are MS related.  Have you been checked for arthritis? Carol…go barefoot!  :-) Everybody…MS causes a lack of exercise… a lack of exercise causes many non-MS problems, one being lower back weakness.  Lower back problems can cause sciatica which can mimic MS in many ways.  Exercise your back to whatever degree you can!!!!!   Jumping to conclusions, flying off the handle and running around in circles do not count as exercise!!!!!! Tick *****Don’t cry because it’s over, smile because it happened***** http://community.webtv.net/OLTICK/GTakaTICKsWEBPAGE

Response:

OLT…@webtv.net (G T) writes:

Terry…not all of our aches and pains are MS related.  Have you been checked for arthritis?

MS is an auto-immune disease. It can trigger certain other auto-immune diseases, like diabetes, arthritis, bursitis, venous stasis, etcetera. It can ALSO trigger several that cause peripheral numbness and pain. Note that *ANY* auto-immune disease can do this, including fibromyalgia. A large number of them can cause numbness in the hands and feet. Sometimes due to a cascade of problems. Example MS triggers arthritis, which causes crumbling of a vertebra or two, creating compressed/ruptured disks. The treatment isn’t for MS OR arthritis – it’s traction and heat for the ruptured disk.

Carol…go barefoot!  :-) Everybody…MS causes a lack of exercise… a lack of exercise causes many non-MS problems, one being lower back weakness.  Lower back problems can cause sciatica which can mimic MS in many ways.  Exercise your back to whatever degree you can!!!!!  

Numbness in the legs can be caused by as simple a problem as too much chair parade. I was panicing about neuropathy from the diabetes causing me to lose sensation in my feet. It was "cured" by changing chairs and getting up and hobbling about some more. You’re dead on about exercising the back. It applies to lots of situations.

Jumping to conclusions, flying off the handle and running around in circles do not count as exercise!!!!!!

Damn! Now I have to completely redo my exercize program!

Response:

Hi Tick, Funny you should give me of all people that advise to go barefoot.  I usually am — of course exception being when I am out in public. You know how us backwoods Texans are! I was just finishing up my travel plans for our upcomong trip to the casinos on Wednesday (we go to Lake Charles and Grand Casino in Kinder La.) and the vision of me sitting at the black jack table barefoot made me smile. My best to you, Carol

Response:

Tick, jumping to conclusions is hard enough exercise for me. In fact my family would be so happy if I would just stop this particular exercise all together. :-)  dory

Response:

LOL!!! Same here, Dory, Same here! :o ) Hugs & Prayers, Tee — MS MounTain http://www.dsgnworks.com/~msmt/ RedLady’s Home http://www.angelfire.com/ky/redlady/index.html <xdewdr…@webtv.net

wrote in message

news:15375-3867BA60-11@storefull-111.iap.bryant.webtv.net… | Tick, jumping to conclusions is hard enough exercise for me. In fact my | family would be so happy if I would just stop this particular exercise | all together. :-)  dory |

Response:

On Mon, 27 Dec 1999 11:44:50 -0600 (CST), cm…@webtv.net (carol forsythe) wrote:

Hi Tick, Funny you should give me of all people that advise to go barefoot.  I usually am — of course exception being when I am out in public. You know how us backwoods Texans are!

I’m hobbling and wobbling worse than usual because I have been wearing shoes!  We have been doing Christmas visiting which means both shoes and houses where my wheelchair won’t go.  I wobble in in my shoes and sit down. My balance gets worse and worse as the day goes on.  Both feet are completely numb and my right leg is getting numb up to the knee. My shoes are off for good now.  I plan to spend tomorrow here, snowed in, resting and getting back to normal. Love, Kate

Response:

As exercise goes, perhaps I should stop diving in, shooting from the lip, and running for cover, in favour of sitting on the fence?  Could it be the original finger numbness resulted from raising it too often?? ;D Carmel xdewdr…@webtv.net wrote:

Tick, jumping to conclusions is hard enough exercise for me. In fact my family would be so happy if I would just stop this particular exercise all together. :-)  dory

— " Don’t wait for a light to appear at the end of the tunnel.   Stride down there and light the bloody thing yourself." www.cyberwizards.com.au/~carmel www.cyberwizards.com.au/~jaragun

Response:

Yes my first MS attack started with all my fingers in bothe hands going numb at night and tingling. I thought it was because of the heatwave. Good Luck stay in good health. Eat well!!!   Try cutting out allergins especially food. I am off gluten and dairy and refined sugar and chocolate and saturated fats and caffeine and my symptoms are a little better. You should probably get book on Nutrition that has section on MS. Take esential oils. Take care of your self. Drink Tons of Water do yoga. Take you like in your hands. Tell me what drugs are you taking for it? Please sytay in touch Good Luck!!! Karen Kuti…@aol.com

Response:

quandry

Question:

Yes, and truly for no other reasons than for our own selfish need to physically and mentally prepare for the operation.  It is  the key to self esteem, a fuel needed for survival with dignity. As matter of fact, self responsibility can become a source of inspiration for others especially the young ones and thus offered a basis for family to get involved. In my case, because I value my sibblings for the individuals that  they are, I opted for a cadaver kidney. Once  transplanted, I considered it a personal achievement . Everyone was amazed at my independence  and joined in the celebration without guilt. So in the end, the "kidney problem" was transformed into  a positive experience for all involved. From my ESRF experience, I came to the conclusion that altruism is the root of much dishonesty, tension and suffering I see around me. Bill and Bob’s situation is an illustration of the consequences of this type of morality.We must survive, as dignified human beings. Best wishes to you. AisA "Homefinders" <juda…@bigpond.net.au

wrote in message

news:5un8d.14469$5O5.2381@news-server.bigpond.net.au… – Hide quoted text — Show quoted text -

I couldn’t agree more.  Based on the info provided, Bill sounds like he isn’t prepared to accept responsibility for helping to improve his health with the assistance he already has.  He needs an attitude transplant

before

he gets a kidney transplant and needs to show that he can look after

himself

by becoming compliant and not smoking or abusing prescription meds. I have 3 younger brothers, none of whom have the problems that Bob has,

but

they all decided that for their own reasons they couldn’t or wouldn’t

donate

a kidney to me.  I accepted this and settled in to wait for a cadaver

donor.

The best way of waiting is to ensure that you take the best possible care

of > yourself, rather than acting as the "victim" in this scenario.  Self > responsibility leads to self improvement. > Judanne > "AisA" <a…@ix.netcom.com

wrote in message

> news:_%A6d.4370$ls6.1631@newsread3.news.atl.earthlink.net… > > Bob should rexamine his premise of self-sacrifice, which usually means > > others calling for Bob to sacrifice but rarely reciprocated. > > Bob should live a life within his own personal interest: his life, his > > wife’s life and his children. > > Whom does Bob value more? his wife or his brother? > > Bob should not accept the ethics of self sacrifice: he should value his > > life > > and  his family before his brother. > > Bob should not feel tormented if Bill dies. > > Bill  can get a cadaver kidney, but he has to work on it to get on the > > list. > > If he is undisciplined about this goal , there is no indication that he > > will > > be responsible with a living donor kidney. There is a reason why the Drs > > and > > transplant committee won’t put him on the list: they don’t want to waste a

cadaver kidney, let alone a living donor kidney. Bob should focus on the mother of his children. Bob should not donate his kidney to his brother and save it for his

wife,

if he decides she deserves it.

Response:

Donating a kidney to someone who refuses to quit smoking? Considering Bill refuses to quit smoking for his own health, there are an endless stream of other possibilities for him to abuse his system and lead to the further deterioration of his body let alone whether he has a functioning transplanted kidney. What happens when Bill gets the kidney, trashes it and is back on dialysis? How will Bob feel? It’s almost like giving money to a crack addict. The problem is not going to be resolved and rather more likely to be exacerbated. With all due respect, this goes for Bill’s wife too. If you’re trying to assist your body to heal and be more accommodating to a transplant, then smoking and partaking in any other harmful substances are an offence to the notion of donation. 1. Get Bill to stop smoking and stop any other unhealthy habits. 2. Get wife to stop smoking and stop any other unhealthy habits. 3. Both are close, but only donate to the one which is most urgent when it really is urgent. It would seem that the need by Bill is not urgent. Therefore, at some point his wife’ requirement may be more urgent than Bill’s hence a donation to his wife. "backbeat" <backbeat…@verizon.net

wrote in message

news:qrh6d.1778$Xd2.1531@trndny01… – Hide quoted text — Show quoted text -

Help resolve this dissonance with your thoughts. Bill and Bob are brothers. Bill is 62 and he has ESRD,  some  PAD and CAD. He smokes. Recently he had an episode of renal encephalopathy and nearly died, it was related to insufficient dialysis time. Bill gets very bad headaches from dialysis, and neuropathy from the ESRD.

He

was  prescribed  percocet to help him cope, this drug may have played some role in the development of encephalopathy because there was evidence of abuse. Bill’s doctor threatened to cut him from the recipient list if he

did

not’t stop smoking. So far, he has been unable to do so. Bill went to the ER again, the second time in a month, hemorrhaging from

the

rectum. His hematocrit dropped to 18. HGB 6. Bill was transfused with 6 units. This episode was caused by excessive Excedrin ingestion (2 grams ASA/day), combined with high BP, these opened up a bleeding ulcer. Bill

has

been going through hell lately. Bob is married to two younger kids: 11 and 15. Bob has a mortgage and is financially struggling. Bob’s wife is 48 and has HTN, newly diagnosed diabetes, she is morbidly obese, smokes. She has the same disease as Bill

as

well: focal segmented glomerular nephritis. In December, Bill asked Bob consider giving a kidney because he couldn’t tolerate dialysis. Bob said

he’

d look into it. Bob was worried because of his wife’s condition, if something happened to him related to surgery, something might soon happen to his wife, and his family would be in jeopardy. The family has no backup support because they are older parents.. Most relatives are distant and  older. Bob went to have the blood work done. He was a 0/6 HLA match with negative cross match. The meaning of the HLA status is ambiguous. Not ideal. Bob is seeing his brother in great distress; he sees his brother fading, wasting. He can see his brother got a raw deal in life: Bob was the favored son,

Bob

was doing better in many ways, and his father neglected Bill. There is

deep

resentment there on Bills’ side toward Bob. Does Bob give Bill a kidney?

How

do they resolve this problem when it is clear that Bill may die before a kidney comes, and Bob will probably feel tormented if this occurs? It seems neither can win this situation. Bob is watching Bill get sicker. However, he realizes that transplant scenarios do not always go like described in Readers digest. Either could die on the table. Acute

rejection

could occur. By trying to help his brother by feeling pressured, or motivated by guilt, and given his brother’s compromised state, Bob could kill his brother in an attempt to help. Bill could  become sensitized to those six antigens and limit options for a second transplant to a perfect HLA match, should the first fail. There is some family pressure to donate the kidney because in theory it

can

be done, but a sister with young kids understands Bob’s reluctance to go forward. An older sister reinforces Bill’s anger but stoking it, saying:"

he

shouldn’t have had the blood work if he didn’t intend to go through with  it." The sister assumes Bob has made up his mind and then had the test.

Bob

still has not made up his mind. What should Bob do? Should he donate the kidney? Should he resolve not to donate the  kidney and help build brother up so that he could survive

until

kidney becomes available? Should he keep the option open if transplant becomes a necessity? In the usual transplant situation, all the variables are examined with the family. Bill refuses a family meeting saying: "if

you

mention all that stuff about your wife they won’t do it." What do you think? backbeat

Response:

On Tue, 28 Sep 2004 17:45:58 GMT, "backbeat" <backbeat…@verizon.net

wrote: – Hide quoted text — Show quoted text -

Help resolve this dissonance with your thoughts. Bill and Bob are brothers. Bill is 62 and he has ESRD,  some  PAD and CAD. He smokes. Recently he had an episode of renal encephalopathy and nearly died, it was related to insufficient dialysis time. Bill gets very bad headaches from dialysis, and neuropathy from the ESRD. He was  prescribed  percocet to help him cope, this drug may have played some role in the development of encephalopathy because there was evidence of abuse. Bill’s doctor threatened to cut him from the recipient list if he did not’t stop smoking. So far, he has been unable to do so. Bill went to the ER again, the second time in a month, hemorrhaging from the rectum. His hematocrit dropped to 18. HGB 6. Bill was transfused with 6 units. This episode was caused by excessive Excedrin ingestion (2 grams ASA/day), combined with high BP, these opened up a bleeding ulcer. Bill has been going through hell lately. Bob is married to two younger kids: 11 and 15. Bob has a mortgage and is financially struggling. Bob’s wife is 48 and has HTN, newly diagnosed diabetes, she is morbidly obese, smokes. She has the same disease as Bill as well: focal segmented glomerular nephritis. In December, Bill asked Bob consider giving a kidney because he couldn’t tolerate dialysis. Bob said he’ d look into it. Bob was worried because of his wife’s condition, if something happened to him related to surgery, something might soon happen to his wife, and his family would be in jeopardy. The family has no backup support because they are older parents.. Most relatives are distant and  older. Bob went to have the blood work done. He was a 0/6 HLA match with negative cross match. The meaning of the HLA status is ambiguous. Not ideal. Bob is seeing his brother in great distress; he sees his brother fading, wasting. He can see his brother got a raw deal in life: Bob was the favored son, Bob was doing better in many ways, and his father neglected Bill. There is deep resentment there on Bills’ side toward Bob. Does Bob give Bill a kidney? How do they resolve this problem when it is clear that Bill may die before a kidney comes, and Bob will probably feel tormented if this occurs? It seems neither can win this situation. Bob is watching Bill get sicker. However, he realizes that transplant scenarios do not always go like described in Readers digest. Either could die on the table. Acute rejection could occur. By trying to help his brother by feeling pressured, or motivated by guilt, and given his brother’s compromised state, Bob could kill his brother in an attempt to help. Bill could  become sensitized to those six antigens and limit options for a second transplant to a perfect HLA match, should the first fail. There is some family pressure to donate the kidney because in theory it can be done, but a sister with young kids understands Bob’s reluctance to go forward. An older sister reinforces Bill’s anger but stoking it, saying:" he shouldn’t have had the blood work if he didn’t intend to go through with it." The sister assumes Bob has made up his mind and then had the test. Bob still has not made up his mind. What should Bob do? Should he donate the kidney? Should he resolve not to donate the  kidney and help build brother up so that he could survive until kidney becomes available? Should he keep the option open if transplant becomes a necessity? In the usual transplant situation, all the variables are examined with the family. Bill refuses a family meeting saying: "if you mention all that stuff about your wife they won’t do it." What do you think? backbeat

Bob needs to make this decision himself.  He should always be aware that at any time prior to undergoing the anesthesia for the kidney donation he is free to back out of this.  He should never be pressured by anyone to do this.  Bob should only donate the kidney if he feels it is the right thing to do in his situation and he understands all the risks involved.  There are never any guarantees, just calculated guesses based upon the odds. Larry

Response:

Sounds like they could all do with some family counselling, especially Bob and Bill. Judanne "backbeat" <backbeat…@verizon.net

wrote in message

news:vdc7d.29477$Wa7.10112@trndny06… – Hide quoted text — Show quoted text -> One sister has four kids, two of whom have medical problems. The other is > 63, fairly healthy, but supposedly has a BP that is bit two high, she’s > also > a hypochondriac – she thinks she has the same disease, but does not. > Ironically – she’s dumping the biggest guilt trip on Bob. She has not done > the blood test. Her kids are grown, mortgage paid, husband rich. Get the > picture? > backbeat > "Richard Archer" <mrrichardarc…@nospam.com

wrote in message

> news:cjj32b$4b0$1@newsg3.svr.pol.co.uk… >> "backbeat" <backbeat…@verizon.net

wrote in message

>> news:qrh6d.1778$Xd2.1531@trndny01… >> > snip> >> I see the mention of some sisters in the post, have they considered >> donations? >> It shouldn’t be just down to Bob. >> Richard Archer

Response:

I couldn’t agree more.  Based on the info provided, Bill sounds like he isn’t prepared to accept responsibility for helping to improve his health with the assistance he already has.  He needs an attitude transplant before he gets a kidney transplant and needs to show that he can look after himself by becoming compliant and not smoking or abusing prescription meds. I have 3 younger brothers, none of whom have the problems that Bob has, but they all decided that for their own reasons they couldn’t or wouldn’t donate a kidney to me.  I accepted this and settled in to wait for a cadaver donor. The best way of waiting is to ensure that you take the best possible care of yourself, rather than acting as the "victim" in this scenario.  Self responsibility leads to self improvement. Judanne "AisA" <a…@ix.netcom.com

wrote in message

news:_%A6d.4370$ls6.1631@newsread3.news.atl.earthlink.net… – Hide quoted text — Show quoted text -

Bob should rexamine his premise of self-sacrifice, which usually means others calling for Bob to sacrifice but rarely reciprocated. Bob should live a life within his own personal interest: his life, his wife’s life and his children. Whom does Bob value more? his wife or his brother? Bob should not accept the ethics of self sacrifice: he should value his life and  his family before his brother. Bob should not feel tormented if Bill dies. Bill  can get a cadaver kidney, but he has to work on it to get on the list. If he is undisciplined about this goal , there is no indication that he will be responsible with a living donor kidney. There is a reason why the Drs and transplant committee won’t put him on the list: they don’t want to waste a cadaver kidney, let alone a living donor kidney. Bob should focus on the mother of his children. Bob should not donate his kidney to his brother and save it for his wife, if he decides she deserves it.

Response:

"backbeat" <backbeat…@verizon.net

wrote in message

news:qrh6d.1778$Xd2.1531@trndny01…

snip

I see the mention of some sisters in the post, have they considered donations? It shouldn’t be just down to Bob. Richard Archer

Response:

One sister has four kids, two of whom have medical problems. The other is 63, fairly healthy, but supposedly has a BP that is bit two high, she’s also a hypochondriac – she thinks she has the same disease, but does not. Ironically – she’s dumping the biggest guilt trip on Bob. She has not done the blood test. Her kids are grown, mortgage paid, husband rich. Get the picture? backbeat "Richard Archer" <mrrichardarc…@nospam.com

wrote in message

news:cjj32b$4b0$1@newsg3.svr.pol.co.uk… – Hide quoted text — Show quoted text -> "backbeat" <backbeat…@verizon.net

wrote in message

> news:qrh6d.1778$Xd2.1531@trndny01… > > snip> > I see the mention of some sisters in the post, have they considered > donations? > It shouldn’t be just down to Bob. > Richard Archer

Response:

On Tue, 28 Sep 2004 17:45:58 GMT, "backbeat" <backbeat…@verizon.net

wrote: What should Bob do? Should he donate the kidney? Should he resolve not to donate the  kidney and help build brother up so that he could survive until kidney becomes available? Should he keep the option open if transplant becomes a necessity? In the usual transplant situation, all the variables are examined with the family. Bill refuses a family meeting saying: "if you mention all that stuff about your wife they won’t do it." What do you think?

If I were Bob, I’d keep my kidney — if you’re the only support for a family (or in a situation where you soon might be), that has to come before siblings. Yes, dialysis can suck (and it sounds like it is for Bill), but it doesn’t seem like Bill’d be very good at taking care of a new kidney, either. (I don’t know how much help answers from strangers will be — every family’s choices are going to be very personal. Bob definitely does not need to feel guilty about not sacrificing his own health for his brother.) — chuk

Response:

"backbeat" <backbeat…@verizon.net

wrote in message

news:qrh6d.1778$Xd2.1531@trndny01… – Hide quoted text — Show quoted text -

Help resolve this dissonance with your thoughts. Bill and Bob are brothers. Bill is 62 and he has ESRD,  some  PAD and CAD. He smokes. Recently he had an episode of renal encephalopathy and nearly died, it was related to insufficient dialysis time. Bill gets very bad headaches from dialysis, and neuropathy from the ESRD.

He

was  prescribed  percocet to help him cope, this drug may have played some role in the development of encephalopathy because there was evidence of abuse. Bill’s doctor threatened to cut him from the recipient list if he

did

not’t stop smoking. So far, he has been unable to do so. Bill went to the ER again, the second time in a month, hemorrhaging from

the

rectum. His hematocrit dropped to 18. HGB 6. Bill was transfused with 6 units. This episode was caused by excessive Excedrin ingestion (2 grams ASA/day), combined with high BP, these opened up a bleeding ulcer. Bill

has

been going through hell lately. Bob is married to two younger kids: 11 and 15. Bob has a mortgage and is financially struggling. Bob’s wife is 48 and has HTN, newly diagnosed diabetes, she is morbidly obese, smokes. She has the same disease as Bill

as

well: focal segmented glomerular nephritis. In December, Bill asked Bob consider giving a kidney because he couldn’t tolerate dialysis. Bob said

he’

d look into it. Bob was worried because of his wife’s condition, if something happened to him related to surgery, something might soon happen to his wife, and his family would be in jeopardy. The family has no backup support because they are older parents.. Most relatives are distant and  older. Bob went to have the blood work done. He was a 0/6 HLA match with negative cross match. The meaning of the HLA status is ambiguous. Not ideal. Bob is seeing his brother in great distress; he sees his brother fading, wasting. He can see his brother got a raw deal in life: Bob was the favored son,

Bob

was doing better in many ways, and his father neglected Bill. There is

deep

resentment there on Bills’ side toward Bob. Does Bob give Bill a kidney?

How

do they resolve this problem when it is clear that Bill may die before a kidney comes, and Bob will probably feel tormented if this occurs? It seems neither can win this situation. Bob is watching Bill get sicker. However, he realizes that transplant scenarios do not always go like described in Readers digest. Either could die on the table. Acute

rejection

could occur. By trying to help his brother by feeling pressured, or motivated by guilt, and given his brother’s compromised state, Bob could kill his brother in an attempt to help. Bill could  become sensitized to those six antigens and limit options for a second transplant to a perfect HLA match, should the first fail. There is some family pressure to donate the kidney because in theory it

can

be done, but a sister with young kids understands Bob’s reluctance to go forward. An older sister reinforces Bill’s anger but stoking it, saying:"

he

shouldn’t have had the blood work if he didn’t intend to go through with  it." The sister assumes Bob has made up his mind and then had the test.

Bob

still has not made up his mind. What should Bob do? Should he donate the kidney? Should he resolve not to donate the  kidney and help build brother up so that he could survive

until

kidney becomes available? Should he keep the option open if transplant becomes a necessity? In the usual transplant situation, all the variables are examined with the family. Bill refuses a family meeting saying: "if

you

mention all that stuff about your wife they won’t do it." What do you think? backbeat

Bob should rexamine his premise of self-sacrifice, which usually means others calling for Bob to sacrifice but rarely reciprocated. Bob should live a life within his own personal interest: his life, his wife’s life and his children. Whom does Bob value more? his wife or his brother? Bob should not accept the ethics of self sacrifice: he should value his life and  his family before his brother. Bob should not feel tormented if Bill dies. Bill  can get a cadaver kidney, but he has to work on it to get on the list. If he is undisciplined about this goal , there is no indication that he will be responsible with a living donor kidney. There is a reason why the Drs and transplant committee won’t put him on the list: they don’t want to waste a cadaver kidney, let alone a living donor kidney. Bob should focus on the mother of his children. Bob should not donate his kidney to his brother and save it for his wife, if he decides she deserves it.

Response:

Sophies Choice ! – Hide quoted text — Show quoted text -backbeat wrote:

Help resolve this dissonance with your thoughts. Bill and Bob are brothers. Bill is 62 and he has ESRD,  some  PAD and CAD. He smokes. Recently he had an episode of renal encephalopathy and nearly died, it was related to insufficient dialysis time. Bill gets very bad headaches from dialysis, and neuropathy from the ESRD. He was  prescribed  percocet to help him cope, this drug may have played some role in the development of encephalopathy because there was evidence of abuse. Bill’s doctor threatened to cut him from the recipient list if he did not’t stop smoking. So far, he has been unable to do so. Bill went to the ER again, the second time in a month, hemorrhaging from the rectum. His hematocrit dropped to 18. HGB 6. Bill was transfused with 6 units. This episode was caused by excessive Excedrin ingestion (2 grams ASA/day), combined with high BP, these opened up a bleeding ulcer. Bill has been going through hell lately. Bob is married to two younger kids: 11 and 15. Bob has a mortgage and is financially struggling. Bob’s wife is 48 and has HTN, newly diagnosed diabetes, she is morbidly obese, smokes. She has the same disease as Bill as well: focal segmented glomerular nephritis. In December, Bill asked Bob consider giving a kidney because he couldn’t tolerate dialysis. Bob said he’ d look into it. Bob was worried because of his wife’s condition, if something happened to him related to surgery, something might soon happen to his wife, and his family would be in jeopardy. The family has no backup support because they are older parents.. Most relatives are distant and  older. Bob went to have the blood work done. He was a 0/6 HLA match with negative cross match. The meaning of the HLA status is ambiguous. Not ideal. Bob is seeing his brother in great distress; he sees his brother fading, wasting. He can see his brother got a raw deal in life: Bob was the favored son, Bob was doing better in many ways, and his father neglected Bill. There is deep resentment there on Bills’ side toward Bob. Does Bob give Bill a kidney? How do they resolve this problem when it is clear that Bill may die before a kidney comes, and Bob will probably feel tormented if this occurs? It seems neither can win this situation. Bob is watching Bill get sicker. However, he realizes that transplant scenarios do not always go like described in Readers digest. Either could die on the table. Acute rejection could occur. By trying to help his brother by feeling pressured, or motivated by guilt, and given his brother’s compromised state, Bob could kill his brother in an attempt to help. Bill could  become sensitized to those six antigens and limit options for a second transplant to a perfect HLA match, should the first fail. There is some family pressure to donate the kidney because in theory it can be done, but a sister with young kids understands Bob’s reluctance to go forward. An older sister reinforces Bill’s anger but stoking it, saying:" he shouldn’t have had the blood work if he didn’t intend to go through with  it." The sister assumes Bob has made up his mind and then had the test. Bob still has not made up his mind. What should Bob do? Should he donate the kidney? Should he resolve not to donate the  kidney and help build brother up so that he could survive until kidney becomes available? Should he keep the option open if transplant becomes a necessity? In the usual transplant situation, all the variables are examined with the family. Bill refuses a family meeting saying: "if you mention all that stuff about your wife they won’t do it." What do you think? backbeat

Response:

Help resolve this dissonance with your thoughts. Bill and Bob are brothers. Bill is 62 and he has ESRD,  some  PAD and CAD. He smokes. Recently he had an episode of renal encephalopathy and nearly died, it was related to insufficient dialysis time. Bill gets very bad headaches from dialysis, and neuropathy from the ESRD. He was  prescribed  percocet to help him cope, this drug may have played some role in the development of encephalopathy because there was evidence of abuse. Bill’s doctor threatened to cut him from the recipient list if he did not’t stop smoking. So far, he has been unable to do so. Bill went to the ER again, the second time in a month, hemorrhaging from the rectum. His hematocrit dropped to 18. HGB 6. Bill was transfused with 6 units. This episode was caused by excessive Excedrin ingestion (2 grams ASA/day), combined with high BP, these opened up a bleeding ulcer. Bill has been going through hell lately. Bob is married to two younger kids: 11 and 15. Bob has a mortgage and is financially struggling. Bob’s wife is 48 and has HTN, newly diagnosed diabetes, she is morbidly obese, smokes. She has the same disease as Bill as well: focal segmented glomerular nephritis. In December, Bill asked Bob consider giving a kidney because he couldn’t tolerate dialysis. Bob said he’ d look into it. Bob was worried because of his wife’s condition, if something happened to him related to surgery, something might soon happen to his wife, and his family would be in jeopardy. The family has no backup support because they are older parents.. Most relatives are distant and  older. Bob went to have the blood work done. He was a 0/6 HLA match with negative cross match. The meaning of the HLA status is ambiguous. Not ideal. Bob is seeing his brother in great distress; he sees his brother fading, wasting. He can see his brother got a raw deal in life: Bob was the favored son, Bob was doing better in many ways, and his father neglected Bill. There is deep resentment there on Bills’ side toward Bob. Does Bob give Bill a kidney? How do they resolve this problem when it is clear that Bill may die before a kidney comes, and Bob will probably feel tormented if this occurs? It seems neither can win this situation. Bob is watching Bill get sicker. However, he realizes that transplant scenarios do not always go like described in Readers digest. Either could die on the table. Acute rejection could occur. By trying to help his brother by feeling pressured, or motivated by guilt, and given his brother’s compromised state, Bob could kill his brother in an attempt to help. Bill could  become sensitized to those six antigens and limit options for a second transplant to a perfect HLA match, should the first fail. There is some family pressure to donate the kidney because in theory it can be done, but a sister with young kids understands Bob’s reluctance to go forward. An older sister reinforces Bill’s anger but stoking it, saying:" he shouldn’t have had the blood work if he didn’t intend to go through with  it." The sister assumes Bob has made up his mind and then had the test. Bob still has not made up his mind. What should Bob do? Should he donate the kidney? Should he resolve not to donate the  kidney and help build brother up so that he could survive until kidney becomes available? Should he keep the option open if transplant becomes a necessity? In the usual transplant situation, all the variables are examined with the family. Bill refuses a family meeting saying: "if you mention all that stuff about your wife they won’t do it." What do you think? backbeat

Response:

Transplant wait

Question:

How long do people have to wait on an average for a transplant?

Response:

I have been on hemodialysis for over 8 years now.  I will be on the transplant list 4 years total come January 31, 2001.  I personally have seen people get a kidney after being on the transplant list for less than a month and others wait over 7 years and pass away before receiving a transplant. There are a number of factors taken into consideration as to when you will receive a transplant.  I believe the average now is considered to be between 3 and 7 years.  When I was first put on the kidney transplant list on July 31, 1987 I was told with my blood type (A +) I would wait 2 to 3 years.  I was told last year the wait would be 4 to 5 years.  I was pressured by both the doctor in charge of the kidney transplant department and my kidney transplant coordinator on separate occasions to find a living donor or face waiting years and years longer for my transplant. The person I saw get her kidney transplant within a month had run out of access sites for her shunt and was not being adequately dialyzed through her catheter and was in immediate danger of dying.  She was put on the list and almost immediately found a kidney.  She was approximately 45 years old. The person I saw wait for 7 years had a successful kidney transplant for 14 years and then rejected it.  He had a lot of medical problems and waited for 7 years for a second transplant.  He died in his chair at hemodialysis following hip replacement surgery during which he had picked up an infection of some sort.  He was approximately 70 years old. I have had a liver transplant.  It was done in July of 1992.  I did not wait on a list for more than a few weeks.  I had contracted Hepatitis A and gone into a coma and was in immediate danger of dying.  That is very unusual for a Hepatitis A patient.  In my experience I have never come across another liver transplant do to Hepatitis A.  My kidneys failed when my liver failed. Dialysis can save your life with failed kidneys.  Only a transplant can save your life with a failed liver.  The sickest patients are usually given top priority when a compatible organ is found.  I was 42 years old at the time of my liver transplant.  Due to many complications I was hospitalized for over 5 1/2 months and it took almost a year before I could walk and take care of myself again.  I was in a coma for almost a month before I received the liver transplant.  I was so close to death that my family was planning my funeral.  I was very lucky to have gotten the liver when I did.  I lost most of my hearing as a result to being given the drug Gentamycin to combat an infection and save my life after the liver transplant.  I also ended up with an extremely painful case of peripheral neuropathy from the immunosuppressant Cyclosporin I take to keep from rejecting my liver, according to my neurologist.  I am still here and able to raise my twin sons because I received my liver transplant.  It is very risky in my case to have a kidney transplant.  I had to fight for several years before I was able to get onto the kidney transplant list.  I believe a kidney transplant will give me the best chance of living long enough to see my sons grow into men. Several doctors have prophesized that if I do reject the kidney I may reject the liver at the same time and probably die.  Five other doctors have said that I will not reject the liver if I reject the kidney.  No one knows for sure.  The head of the kidney transplant department has told me that I will become an insulin dependant diabetic for a year because of the high doses of corticosteroids I will be given for the kidney transplant.  I was an insulin dependant diabetic for 4 months prior to and after my liver transplant as my pancreas was failing also in sympathy with my liver and kidney failure. There are some tough decisions that you have to make in life.  My sons need me.  My wife needs me.  I want my life back. Larry "David McLees" <da…@donet.com

wrote in message

news:kDzD5.10295$Sr.7675@newsfeed.slurp.net… – Hide quoted text — Show quoted text -

How long do people have to wait on an average for a transplant?

Response:

every single person will or has waited different lengths of time for a transplant. I personally waited six weeks the first time but have been waiting three and a half years this time and am still waiting. A lot of the time your natural antibodies are the problem but generally within my unit people get their first kidney in the first year of being on "the list". Good luck and don’t despair. Hope you get a good one!

Response:

I’m registered with UCLA Medical Center for my kidney TX.  They happen to have the lowest rejection rate in the southern California area.  There is a long waiting list there, probably due to the population density in the LA area.  My insurer is Kaiser Permanente.  Kaiser used to use Loma Linda Medical Center for kidney TX also.  Kaiser stopped using Loma Linda several years ago.  The reason I heard was because of the high rejection rate, although I don’t know if that is the truth.  Loma Linda would have been much more convenient for me because of it’s proximity to my home.  With UCLA being such a long drive and a requirement of their kidney TX program is being seen by them every other day for six weeks following your release from the hospital I will probably have to stay at a hotel they have made arrangements with for the entire six week period.  You aren’t allowed to drive yourself to the follow up visits for the six week period, and I also have to pay for the hotel stay and my meals out of my own pocket.  This will be expensive for me, but if it results in my being able to keep the kidney and not reject it, it will be worth every penny.  I have never had a problem with my natural antibodies.  I have asked about my antibodies several times. I was told that if you have an antibody problem that doesn’t resolve itself, even though you are on the transplant list, you may never receive a transplant. Larry "Ricky Hobson" <Ricky.Hob…@btinternet.com

wrote in message

news:8rnr78$4ok$1@neptunium.btinternet.com… – Hide quoted text — Show quoted text -

every single person will or has waited different lengths of time for a transplant. I personally waited six weeks the first time but have been waiting three and a half years this time and am still waiting. A lot of

the

time your natural antibodies are the problem but generally within my unit people get their first kidney in the first year of being on "the list". Good luck and don’t despair. Hope you get a good one!

Response:

Three years I waited…then they called me on April 10th of this year, the clinic said it was faster as I was up for a kidney and a pancreas.  I was also called last May but thank God the pancreas was not good or I would of lost the transplant as the next day after they sent me home my tentkoff site(had it removed the prior week) split open and was infected.  The wait varies, they also called me this past Feb but my Hgb and Hct was too low. — TC3 "David McLees" <da…@donet.com

wrote in message

news:kDzD5.10295$Sr.7675@newsfeed.slurp.net… – Hide quoted text — Show quoted text -

How long do people have to wait on an average for a transplant?

Response:

Ricky Hobson <Ricky.Hob…@btinternet.com

wrote in message

news:8rnr78$4ok$1@neptunium.btinternet.com… . A lot of the time your natural antibodies are the problem That is exactly my problem.  I have been on the the list for 4 1/2 years and my antibodies are very slow to come down.  I would be interested in hearing from someone who has had a similar problem and maybe has had a successful transplant.  They are talking about performing a procedure on me called "Plasmapheresis" which apparently can get rid of antibodies.  Does anyone know anything about it?   It’s fairly new I"ve been told. Jan

Response:

When I was in the hospital in the rehab section 8 years ago there were two men there who both had the same condition.  It was called Guillain-Barre(?) syndrome, or something close to that.  I’m pretty sure that they did plasmapheresis on them using a dialysis machine.  I can’t really remember specific details, but I know both men were paralyzed to different degrees. My memories on this are somewhat vague.  I don’t know if this information will be of help to you. Larry "The Goods" <charg…@nbnet.nb.ca

wrote in message

news:AQPD5.601$iY1.12927@sodalite.nbnet.nb.ca… – Hide quoted text — Show quoted text -> Ricky Hobson <Ricky.Hob…@btinternet.com

wrote in message

> news:8rnr78$4ok$1@neptunium.btinternet.com… > . A lot of the time your natural antibodies are the problem > That is exactly my problem.  I have been on the the list for 4 1/2 years and

my antibodies are very slow to come down.  I would be interested in

hearing

from someone who has had a similar problem and maybe has had a successful transplant.  They are talking about performing a procedure on me called "Plasmapheresis" which apparently can get rid of antibodies.  Does anyone know anything about it?   It’s fairly new I"ve been told. Jan

Response:

In article <AQPD5.601$iY1.12…@sodalite.nbnet.nb.ca

,

        "The Goods" <charg…@nbnet.nb.ca

wrote: Ricky Hobson <Ricky.Hob…@btinternet.com wrote in message news:8rnr78$4ok$1@neptunium.btinternet.com… .. A lot of the time your natural antibodies are the problem That is exactly my problem.  I have been on the the list for 4 1/2 years and my antibodies are very slow to come down.  I would be interested in hearing from someone who has had a similar problem and maybe has had a successful transplant.  They are talking about performing a procedure on me called "Plasmapheresis" which apparently can get rid of antibodies.  Does anyone know anything about it?   It’s fairly new I"ve been told.

I’ve had that done before.  Basically, it entails removing as much of your blood plasma as possible and replacing it with donor plasma.  A small amount of blood is drawn from your body with a dialysis-like machine, which whirls it around in a centrifuge to seperate the red and other cells from the plasma, the plasma is discarded and replaced by donor plasma, pumps the resultant mixture back to your body and the process repeated again many times.  Each treatment lasts about 2 -3  hours and is repeated daily for about two weeks. – Hide quoted text — Show quoted text -

Jan

Response:

tony said: I’ve had that done before.  Basically, it entails removing as much of your blood plasma as possible and replacing it with donor plasma.  A small amount of blood is drawn from your body with a dialysis-like machine, which whirls it around in a centrifuge to seperate the red and other cells from the plasma, the plasma is discarded and replaced by donor plasma, pumps the resultant mixture back to your body and the process repeated again many times.  Each treatment lasts about 2 -3  hours and is repeated daily for about two weeks. I had plasmapherises done 6 years ago at the time I lost my renal function. They did the procedure on me because I have a blood disorder HUS (Hemolytic Uremic Syndrome) which is now in remission.  I found the procedure to be very similar to dialysis as well. ************************ "Well behaved women never make history"

Response:

In article <20001008122455.21233.00000…@ng-fq1.aol.com

,

        girlie…@aol.comdntudare (Michelle) wrote:

tony said: I’ve had that done before.  Basically, it entails removing as much of your blood plasma as possible and replacing it with donor plasma.  A small amount of blood is drawn from your body with a dialysis-like machine, which whirls it around in a centrifuge to seperate the red and other cells from the plasma, the plasma is discarded and replaced by donor plasma, pumps the resultant mixture back to your body and the process repeated again many times.  Each treatment lasts about 2 -3  hours and is repeated daily for about two weeks. I had plasmapherises done 6 years ago at the time I lost my renal function. They did the procedure on me because I have a blood disorder HUS (Hemolytic Uremic Syndrome) which is now in remission.  

That’s the same reason they gave me plasmapharesis.

I found the procedure to be very similar to dialysis as well.

The one exception was that the machine was VERY loud. – Hide quoted text — Show quoted text -

************************ "Well behaved women never make history"

Response:

Tony said: That’s the same reason they gave me plasmapharesis. Tony did this occur at the same time as your original renal failure?  If so I think you are the first person I have met who had that happen who was not pregnant.  Do they know why that happened to you? <<The one exception was that the machine was VERY loud. I don’t remember that but I was very ill at the time.  I do remember that it made my lips have a tingling sensation and they told me that is one of the possible side effects. ************************ "Well behaved women never make history"

Response:

Wait times depend on many factors.  Where your transplant center is and it’s patient caseload is probably the largest determining factor.  One of the places I am listed has about 5000 persons on it’s list and does 250-300 transplants per year so the odds there are not favorable.  I found that I could list in another place that is less "busy" and although it is farther from my home I am willing to pay the costs of having to stay in that city after transplant. Blood type, your medical condition, and of course the quality of the antigen match between you and a potential kidney are all considered when determining wait times.  If a kidney that is perfectly matched to you becomes available today you will get a call. Too bad donation in the U.S. isn’t more common than it now is.  In Europe when a person dies the law considers implied consent when it comes to donation meaning there is a much larger supply of donor organs and people get timely transplants.  I’ll be on dialysis there next week, too bad I can’t arrange a transplant there! "David McLees" <da…@donet.com

wrote in message

news:kDzD5.10295$Sr.7675@newsfeed.slurp.net… – Hide quoted text — Show quoted text -

How long do people have to wait on an average for a transplant?

Response:

In article <20001008194915.23764.00000…@ng-cp1.aol.com

,

        girlie…@aol.comdntudare (Michelle) wrote:

Tony said: That’s the same reason they gave me plasmapharesis. Tony did this occur at the same time as your original renal failure?  If so I think you are the first person I have met who had that happen who was not pregnant.  Do they know why that happened to you?

No, my kidneys did not fail until January 1998. This occured in August 1994. Starting about December of 1993, I started feeling really tired. By July of 1994, I was barely able to function.  As soon as I got off work, I would go to bed about 8:00 I was so tired.  By the middle of July, I started getting nauseous.  By the end of July, I wasn’t eating and had lost 15 lbs.  My heart also started beating irregularly.  Up till then, I had just thought I was working too hard, but I had to finally admit something was wrong.  I went to Kaiser Urgent Care and they found my BP was 240/160.  They weren’t really sure what was wrong with me.  Some of the doctors thought it was HUS.  Others thought it might be someting called TTP.  Anyway, they gave me plasmapharesis as well as blood pressure medicines.  My kidneys had by that time been damaged to the point where they were only functioning at 50%.  They remained at 50% until December of 1997, when they suddenly started to fail.  They finally went the next month.   – Hide quoted text — Show quoted text -

<<The one exception was that the machine was VERY loud. I don’t remember that but I was very ill at the time.  I do remember that it made my lips have a tingling sensation and they told me that is one of the possible side effects. ************************ "Well behaved women never make history"

Response:

I had plasmapheresis done on me when my kidney disease came back in a transplant. It is a lot like dialysis – you’ll use a blood access, and it pulls certain components out of your blood. In my case, they were trying to pull out a factor that caused the "nets" that catch wastes in your blood to warp. "The Goods" <charg…@nbnet.nb.ca

wrote in message

news:AQPD5.601$iY1.12927@sodalite.nbnet.nb.ca… – Hide quoted text — Show quoted text -> Ricky Hobson <Ricky.Hob…@btinternet.com

wrote in message

> news:8rnr78$4ok$1@neptunium.btinternet.com… > . A lot of the time your natural antibodies are the problem > That is exactly my problem.  I have been on the the list for 4 1/2 years and

my antibodies are very slow to come down.  I would be interested in

hearing

from someone who has had a similar problem and maybe has had a successful transplant.  They are talking about performing a procedure on me called "Plasmapheresis" which apparently can get rid of antibodies.  Does anyone know anything about it?   It’s fairly new I"ve been told. Jan

Response:

My fianc

Neuropothy?

Question:

It was probably me that posted about having IFN-induced neuropathy. It was really painful and debilitating and is finally receding, though it’s a slow process. I was sent for neurological tests and my IFN dose was reduced. There’s no way I would want that to be permanent! My problems started around the 6th month of treatment. I am now at week 38 and it looks like I will be continuing at the lowered dose. Lana "Fee Fi" <hop…@comcastNOSPAM.PLEASEnet

wrote in message

news:YWSdnSZagrJxOHCjXTWJhA@comcast.com… – Hide quoted text — Show quoted text -> "vroom" <vroom1…@earthlink.net

wrote in message

> news:bcjku6$cil$0@208.34.191.24… > > Hi all……I was wondering if anyone has neuropothy because of the hepC > or > > the treatment. I know that neuropothy is somewhat common in those with hiv

and on hiv meds, but i seem to recall a post here about someone having

it.

I tested positive for hiv and hepc in april 99. I have never been on hiv meds because everything looks good. I am in my nineth month of peg/riba treatment for the hepc. For the last 2 months i have had a burning tingling in my feet. About a month ago it has progressed to include severe itching of

my

feet and hands/fingers. Nothing seems to help the itching. There is no rash to speak of until i start scratching and then it becomes red. Also there is a tightness kind of like swelling in my toes and fingers. My dr ran

tests

the last time and i should get the results this week. I’m perplexed why

i

would get these symptoms at this time in tx. My dr said it could be the hiv even if i’ve never had any of those meds. I thought i had already experienced every side effect of the tx!  I do get a rash on my face

alot

but nizoral cream and shapmoo clear it up. It’s not the same thing as

with

my feet and hands. Can anyone offer any insight about this hot tingling itching problem? thanks, robert It’s good that your doc is thinking about HIV since it is always in the picture and readily treatable, but the peginterferon seems a more likely culprit.  Also, if grasping for straws, you might ask the doc to rule out "scleroderma", though that is unlikely.  Gabapentin (Neurontin) often

helps

with neuropathy symptoms. Good luck.  My father, who has neuropathy from sarcoidosis, says

"maddening"

is a great description for neuropathy because you feel it but can’t see

it,

and seems to flare up at the worst times. – FF

Response:

Hi all……I was wondering if anyone has neuropothy because of the hepC or the treatment. I know that neuropothy is somewhat common in those with hiv and on hiv meds, but i seem to recall a post here about someone having it. I tested positive for hiv and hepc in april 99. I have never been on hiv meds because everything looks good. I am in my nineth month of peg/riba treatment for the hepc. For the last 2 months i have had a burning tingling in my feet. About a month ago it has progressed to include severe itching of my feet and hands/fingers. Nothing seems to help the itching. There is no rash to speak of until i start scratching and then it becomes red. Also there is a tightness kind of like swelling in my toes and fingers. My dr ran tests the last time and i should get the results this week. I’m perplexed why i would get these symptoms at this time in tx. My dr said it could be the hiv even if i’ve never had any of those meds. I thought i had already experienced every side effect of the tx!  I do get a rash on my face alot but nizoral cream and shapmoo clear it up. It’s not the same thing as with my feet and hands. Can anyone offer any insight about this hot tingling itching problem? thanks, robert

Response:

"vroom" <vroom1…@earthlink.net

wrote in message

news:bcjku6$cil$0@208.34.191.24… – Hide quoted text — Show quoted text -

Hi all……I was wondering if anyone has neuropothy because of the hepC

or

the treatment. I know that neuropothy is somewhat common in those with hiv and on hiv meds, but i seem to recall a post here about someone having it.

I

tested positive for hiv and hepc in april 99. I have never been on hiv

meds

because everything looks good. I am in my nineth month of peg/riba

treatment

for the hepc. For the last 2 months i have had a burning tingling in my feet. About a month ago it has progressed to include severe itching of my feet and hands/fingers. Nothing seems to help the itching. There is no

rash

to speak of until i start scratching and then it becomes red. Also there

is

a tightness kind of like swelling in my toes and fingers. My dr ran tests the last time and i should get the results this week. I’m perplexed why i would get these symptoms at this time in tx. My dr said it could be the

hiv

even if i’ve never had any of those meds. I thought i had already experienced every side effect of the tx!  I do get a rash on my face alot but nizoral cream and shapmoo clear it up. It’s not the same thing as with my feet and hands. Can anyone offer any insight about this hot tingling itching problem? thanks, robert

It’s good that your doc is thinking about HIV since it is always in the picture and readily treatable, but the peginterferon seems a more likely culprit.  Also, if grasping for straws, you might ask the doc to rule out "scleroderma", though that is unlikely.  Gabapentin (Neurontin) often helps with neuropathy symptoms. Good luck.  My father, who has neuropathy from sarcoidosis, says "maddening" is a great description for neuropathy because you feel it but can’t see it, and seems to flare up at the worst times. – FF

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