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Living with Polyneuropathy CIDP, GBS, & CMT

New gal here

This is my first post so please bear with me if I make errors, I started IVIG on my 76 th birthday, Feb 13, 2017 my treatments are every 3 weeks 7 hours per day for 2 days, they seem to give me much fatigue and I am wondering if this is normal. I have gotten some relief with the numbness in my hands, but both feet are still acting like they are dead, balance is awful and I tend to fall a lot. I would like to know just how much to expect from IVIG.

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It is better not to expect anything spectacular till your body accomodates to the IVIg. Every single patient responds differently to IVIg and we all have different degrees of symptoms and are in different age groups. IN GENERAL, the longer you have had the disease and the older you are negatively contribute to the results but younger patients fail to respond as well. I have an older friend with CIDP who was able to get out of his wheelchair after IVIg! Everyone responds differently so you will find no advice on this site but we will share our experiences with our diagnosis, treatment, both positive and negative. Read them all! You will get a much better handle on this thing we call CIDP. We all wish you success in your treatment. We are here for you so use us often. BobN

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For me IVIG has slowed down the progression, but not reversed it. After 4+ years post diagnosis my feet are still as if I’m standing in a bucket of icy cold water and my fingers lack tactile feedback. My legs and arms are weak and balance is an issue. I too get fatigued by my four weekly infusions, but I’m thankful for them.

Thanks so much for the response. I am progressing a wee bit and hope it continues.
Robbyj

I am new to the treatment but I do feel better having them. I also have the feet in the bucket of ice water and hope to get some relief from that.

Hi robbyj, that is a neat idea. I know some people have found relief with going to the pool too, I wonder if you could try that too?