Sensory CIDP

February 10, 2010 at 11:18 am

[FONT=”Arial”][I]Elmo, I, too, have had sensory CIDP for the most part. Feet and legs up to knees primarily … along with the zaps in thumbs/hands from time to time. All has been helped enormously by gabapentin. I’d guess my problem is ‘slowly progressing’ as opposed to relapse/remitting. You note weakness in arms. That’s something that is bothering me as well now. Part of the ‘slowly progressing’, I suppose.

I have my next neuro appointment in 4 months. It’ll be interesting to hear her opinions/suggestions. I have serious doubts I’ll be sent to the “guru” in Houston again unless something drastic happens.

I have no hints to offer you. It would seem that we are at about the same level in this disease.

But if we both are in the ‘slowly progressing’ category, I’m pretty grateful for that.

I’m editing, Elmo … you posted: I’m struggling with “how much information” is good information, and “at what point do I appear like an over-read hypochondriac”? How do I stay “forceful” but “respectful”? We go into these appointments so anticipative of help and answers, and, it seems, walk away feeling dejected and under-appreciated. Is that “US”, or “THEM”? Probably a little of both, I’d suspect.

And that’s the quandry we all face. For me, I have a short list of questions and I approach it that way … saying “I have a few questions” … ‘is this a possibility’ ‘what do you think?’ … you get the idea. Long lists broken into short lists for subsequent doc visits.


Sensory CIDP

December 12, 2009 at 6:22 pm

someone had predominantly sensory CIDP dignostico for autoimmune disease and then had the diagnosis also for intoleracia glucose?

Sensory CIDP

November 23, 2009 at 11:00 pm

Hi there

Like Kazza, I have a predominantly sensory CIDP. It is quite painful. I did not have GBS at all, but it appears that I caught a virus that caused some trauma to my nervous system, and caused the problems.

My reflexes are absent, and I have very little appropriate sensation below my knees and past my wrists. It ranges from total numbness through to spiky painful pins and needles (and everything else!)

While sensory variants are less common than the motor variety, the treatments appear to be the same. At the end of the day, there are only a few treatments anyhow! So, good luck in finding things that work for you.