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I have sensory peripheral neuropathy caused by an auto-immune disease of unknown origin. 3 years now. not diagnosed until last Nov

Same old story as everyone else.

pain/burning/numbness in toes/feet/legs/fingers/hands. warm feeling in legs/thighs. sharp stabbing pain on left side of head once in a while, may not be related, but did find someone else on this board that had it also. Multiple Drs./misdiagnosis. Take 3600mg/day gabapentin (neurontin) 120mg/day Cymbalta. Drugs cause drowsiness/confusion/memory/bladder/bowel/sexual problems. I haven't gone 3 weeks without having to up my meds. Been on them since last Nov.

What I want to know is if anyone has had IVIG (Intravenous Infusion of Immunoglobulin) and what your outcome was. My neurologist says it is my only hope. He says he gave it to one woman and never heard from her again.

I have found people in my same boat that have had SPN or some PN for 4-6 years that are crippled now. Have to use wheel chairs and canes. I'm only 47 and don't want to end up like that. Can't walk the golf course any more now and I've been getting worse faster in the last 6 months.

IVIG only has a 50% success rate. It's very expensive. My Dr. is talking 4-5 days in the Hosp first time and outpatient after that. $10,000 for the immunoglobulin each time.
IVIG is no cure. You have to take it the rest of your life and the sucess rate is lower than 50%. And if it did work and if you ever lose your insurance to pay for it (120,000 a yr) then CIDP will come roaring back..Since most autoimmune diseases are inflammatory then it would make sense to eat an anti inflammatory diet with anti inflammatory supplements until future medicine can help....best wishes.....
6foot3,

thanks for responding. I know IVIG is not a cure, not looking at it as that. There is no cure for PN, at least not the kind I have.

I'm curious though when you say "most autoimmune diseases are inflammatory". I've been told that the inside core of my sensory nerves has been destroyed by my immune system. Of course, they are going by the EMG/NCV to determine this. The only way I guess to know for sure is a nerve biopsy.

Do you know of a way to determine if it is inflammatory ? I guess one sure fire way would be to eat the anti-inflammatory diet you suggest. I'll have to look that up. I didn't think I was eating foods that were considered inflammatory.

Also, I didn't think the meds I am taking were considered anti-inflammatory. They don't say that by the prescription info. I guess I'll have to look further into that also.

thanks again
[QUOTE=golfer7]6foot3,

thanks for responding. I know IVIG is not a cure, not looking at it as that. There is no cure for PN, at least not the kind I have.

I'm curious though when you say "most autoimmune diseases are inflammatory". I've been told that the inside core of my sensory nerves has been destroyed by my immune system. Of course, they are going by the EMG/NCV to determine this. The only way I guess to know for sure is a nerve biopsy.

Do you know of a way to determine if it is inflammatory ? I guess one sure fire way would be to eat the anti-inflammatory diet you suggest. I'll have to look that up. I didn't think I was eating foods that were considered inflammatory.

Also, I didn't think the meds I am taking were considered anti-inflammatory. They don't say that by the prescription info. I guess I'll have to look further into that also.

thanks again[/QUOTE]
Hey Golfer, CIDP means ''chronic INFLAMMATORY demylating polyneuropathy''. Hence the word inflammatory in it. Secondly ask your neurologist to have a spinal tap before you have a nerve biopsy. Once a piece of nerve is removed its permanent paralysis. A spinal tap (lumbar puncture ) will check for about 8 different parameters but the one that shows inflammatory neuropathy is a high ''protein count''. Im not saying that your diet and/or meds are inflammatory but there's alot of research coming out about inflammation and its cause of most diseases outside genetic,viral and/or bacterial. I myself came down with disease 10 yrs ago and have made great improvements but it took alot of research on my behalf to learn how to heal my body when modern medicine can't. Best wishes...
Thanks again 6foot3

more things to check out on my end. yes, nerve biopsy isn't my choice either. I remember something about a high protein count. Can't remember which Dr mentioned it. will check that out.

thanks again, you've been a big help

Golfer7 (6foot4)
The diet will help. I was diagnosed with GBS back in July 04 and recently had a relapse. My doc put me on a new diet that is helping so far. He want's me to cut down on my animal fat protein intake. I don't drink milk anymore and try to eat as lean of meat as I can. Fish is good also for your nerves. Vitamin B is helpfull of regrowing nerves. There are others that may work, you just have to look. Take care.
Good point ruffneck ! If more people would see the diet / disease connection then diseases would slow down. I used to go on other GBS/CIDP sites and they were all gloom and doomers who wanted to hear nothing of radical diet changes to try and heal their (our) disease...........
ruffneck/6foot3,

I can't imagine having GBS. Good luck to you there.

You both are definitely right about diet. I think all the garbage we have been putting in our systems, not to mention environment, cause most of the diseases we see today.

I talked to my wife about any more diet changes I can make after the last time we etalked. I have been watching my diet for the last 15 years. Her and I have been doing the low fat thing (especially animal fat) for at least that long. We both eat fish more than we eat red meat, and red meat is not very often. Maybe a couple times a month, if that sometimes. I'm sure we can do better than we do. I eat tons of fruits, vegetables and fiber and drink mostly water.

One of my biggest problems is the ole, work out for awhile, don't for awhile, work out for awhile, don't for awhile. I think exercise is another thing most people donít realize how good it is for their health. And I'm talking about 30-45 minutes a minimum of 4 times a week of aerobic type cardiovascular and if you can work your muscles at the same time, all the better. I feel so much better when I am in shape, but unfortunately, it doesn't do anything for the neuropathy.

I'll have to check out the Vitamin B thing. Haven't tried that.

ruffneck/6foot3,

Have either of you heard anything about electrical stimulation helping regenerate nerves ?

Thanks for all the info
While my husband was still active in the Army they wanted to try this treatment on him, but I said no....The side effects out weighed the benefits for him in my opinion...He has been on so many different meds with no help...BTW, I make sure his diet is good since he gets little exercise...He is now back on loratab,percocet,ultram,some muscle relaxer, and they just started him back neurontin(sp?)...But, we went to the neuro a week ago, and he stated the new thinking of people with unknown etiology of small fiber peripheral neuropathy will develop diabetes in 5 to 7 yrs....I don't believe this one bit....It has been 3 yrs now since his return from Iraq, I believe the VA is just trying to put something down on paper since this is only the 2nd time he has ever seen my husband, and has yet to see his medical records....Anyways, I wish all of you with PN the best of luck, watching thru my husband I know what an awfully painful disease this is....He has had a spinal and biopsy, spinal normal but the biopsy was abnormal..He also has enlarged ventricals of the brain and a lesion...Ms has been ruled out...Ralinda
The word inflammatory-it is so amazing that more research isn't done into what role inflammatory foods and meds exacaberate this condition
We're a medicated society. Drug companies want to make more money; they wine and dine doctors, who prescribe our meds.

Unfortunately for me, diet hasn't made any difference. I did research into inflammatory foods after messaging with 6Foot3 and ruffNeck and found that a lot of the foods I had already cut out of my diet many years ago were of the inflammatory type.

My wife is a health teacher and teaches nutrition as part of her curriculum and has always been health conscious, not just for weight control, but for overall well being, so my diet has been in pretty good shape for some time.

I don't eat that much, and what I do eat falls into the category of "Good" healthy foods. I eat pretty much just fish, white meat, grains, fruits and vegetables.

I went to a second neurologist that disagreed with the first one about the details of my neuropathy and said that IVIG would do nothing for me, so then I went to Barnes-Jewish Hospital who are regarded as one of the top neuropathy clinics, if not the top, in the country. They agreed with the second Dr.

Although I had this impression from all the research I have done but had it reinforced while at BJH, that not everyone's neuropathy is the same, because the causes are different, and that there are a lot of different things that work for small portions of people inflected. I'm currently participating in a study where I visit them twice a year. Hopefully something may come of it.

I'm still looking for that one thing that helps me. Even being on Lyrica and max doses of neurontin and cymbalta, I still have very bad pain and burning. I can have a week where I'm not too bad, and then 4 days of hell. This seems to be my pattern and I've found it isn't linked to food, unfortunately, because that would be an easy fix.

I missed 5 months of work this year while I was on Morphine. Now that's good stuff. You just can't think straight when you are on it.

Oh well, I've rambled enough. GLTA
IVIG=Intravenous Immuno Globlulin. It's a filtered blood product. It is extracted portions of anitbodies that can boost a malfunctioning immune system. I've been on it for over 2 years and it has helped me immensely. I've had some type of PN/CIDP for over 3 years. Infusions start out slowly to check for your tolerance to the med. and to infusions in general. [B]WEB up IVIG[B][/B][/B]and look at the various cautions prescribing info outlines. Really, in many ways, it's less or equally likely to cause more than the primary listed side effects. Due to the expense and your pain, your docs wouldn't be prescribing it if they didn't think it would help.
As for good diet, diet works only IF you don't have any asorbtion problems. Prior Illness could have affected your ability to extract the nutrients you need and use them properly. Blood tests tracking your vitamin levels can tell you where you are hi or lo. Vitamins B-1 & 12 you can't hurt taking too much of, but don't overload on B-6, it can make things worse.
There are over 50-60 different meds for neuropathies. Over 200 different neuropathies have been identified. Some are inflamatory, genetic and others are due to other issues: diabetes, strokes, injury, etc.
Testing for neuropathies is a process of excluding other issues. Web up "Neuropathy Diagnosis Procedures" and your mind might go on overload, be careful & learn slowly. There's lots out there to learn.
Ask your neuro's about Physical Therapy, most forget that part. Ask for a planned program of exercises you can do at home -they really help keep you going better, longer and help reduce the pain without getting extra strain in the little things of life.
If you can, hold off on any biopsy...if you meet the 9 of 10 criteria [10 being the biopsy] pass on it. It won't change your treatments.
Good luck with the IVIG, I know I really feel better for it.
Thanks for the Info dahlek

Iím glad IVIG seems to work for you, but, it doesn't look like I will be getting IVIG anytime soon. As my post on 9/4 says, my 2nd neurologist as well as the Barnes Docs said they don't feel it would work for me.

What it comes down to is the difference between demyelinating and axonal loss to my sensory nerves. The first neurologist concluded mine was demyelinating, while the second and the Barnes Docs said it was axonal. The difference between the two is whether the nerve has been damaged from the outside in (demyelinating, destroying the myelin sheath first) or from the inside out (axonal). Those with demyelinating loss seem to respond to IVIG, because once they can get the immune system to stop killing the nerve, it can actually regenerate itself.

I've done tons of research on IVIG and neuropathies, had all the blood tests, in fact I don't think there is a test that has to do with neuropathy I haven't had (Oh, Iím sure there is). I have a folder on my PC where I keep track of everything I find. I havenít gotten through all the links yet, and Iíve been doing this for over a year.

Physical therapy makes me hurt worse, although I know that can be just in the beginning and can get better. Mine hasn't yet, but I seem to be getting worse overall. Mine was just basically in my feet for 3 years and the last year it has gone to my waist down and from my shoulders to my fingers.

I turned to these message boards in hopes that someone else has had success with something I hadn't heard of. That hasnít happened yet either, although it hasnít been a waste of time. I have gleaned tons of info and learned of many new things and found there a a ton of people in the same boat as me.

I am now on an every 6-month trip to Barnes at Washington University in St. Louis. They are tracking a certain enzyme that they have very preliminary results on being depleted in a group of patients, however, mine was normal. I guess they want to track mine to see if it ends up being depleted to add to the argument of whether it is a cause or an affect. Plus they are going to perform any new tests that come up in the 6-month timeframe.

GLTY
Golfer7,

Can you tell me if you were ever successful in finding treatment? My wife is in the exact position you were in when you posted your messsage in 2006. I wanted to see if you found any treatment helpful. How are you doing today?





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