Intoduction with questions on Gbs/Cipd

    • Anonymous
      April 3, 2008 at 3:47 pm

      Hi everyone. My name is Greg and I have been reading your posts for a long time. Before I get into my story I want to thank everyone for the information and comfort that this forum brings. I am a 4 time GBSer. I was dx with Gbs in June of 1997. Classic if there is such a thing. 40 hours from sensations to inability to walk. After pp and 11 days in the hospital I could walk with a cane. After 3 months back to normal. The next 3 occurrences would all be the same. I get the stomach “flu” and 3 to 4 weeks later the fun begins. This happened in Jan. 1998; Feb 2003 and Feb 2008. Each and every time I got the stomach “flu” I have had a recurrence of GBS. Each time I have been treated with 4 or 5 sessions of pp. The pp seems to stop the progression and I get my strength back after a couple of months. However, the 2003 left me with residuals in my feet and I expect that the current bout will add to it. I assume that nerves can heal only so many times w/o it becoming a problem in itself. It seems to me that there ought to be a way to stop the attack when you know when it is coming. While the dx has been GBS I believe it may be somewhere in-between GBS and Cipd. Any thoughts?
      Does anyone know a neurologist around Chicago who specializes in the GBS-Cipd distinction and dx. I really need to be proactive in treating this. I hope I can make a positive contribution to this forum. Thanks again, Greg

    • Anonymous
      April 3, 2008 at 3:59 pm

      Hi Greg –

      It does sound interesting. My best guesses would be that it’s either relapsing GBS, which is rare but does happen, or a caught in between GBS & CIDP kind of thing.

      Good luck in finding a dr. I’m sure there’s some dr who will find this fascinating.

      Kelly

    • Anonymous
      April 3, 2008 at 4:11 pm

      Welcome Greg,

      Have you ever had a flu shot? If so you may not want to do that again as it has been known to cause GBS. Let us know if we can help in any way.

    • Dawn Kevies mom
      April 3, 2008 at 4:43 pm

      Hi Greg,
      I am in the suburbs of Chicago. There is a doc a t Univ. of Chicago who happens to be on the board of directors. Our pediatric neuro. was trained by him and we LOVE our neuro. His name is Dr. Barry Arnansan. Call the foundation, the spelling may be wrong. Try to pm member name Shannon, she too is in Chicago and is a laison. I seem to recall they liked their neuro. Maybe she can give you better info regarding the actual doc., as we see a peds doc. Good Luck
      Dawn