Anyone had IVIG (Intravenous Infusion of Immunoglobulin) for Neuropathy - Neuropathy Message Board

golfer7 · 03-02-2006, 06:57 PM

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.

moderator2 · 03-03-2006, 05:25 PM

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6foot3 · 03-07-2006, 07:42 PM

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.....

golfer7 · 03-07-2006, 07:59 PM

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

6foot3 · 03-08-2006, 05:56 PM

Quote:

Originally Posted by 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

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...