father of concerned girl

    • Anonymous
      October 9, 2006 at 7:19 pm

      I was dx in May of this year with CIDP. Early symptoms were tingling in my toes and six weeks later I was in the emergency room where I submitted to a variety of tests (tortures and humiliations). I was then admitted to ICU with severe generalized pain and some difficulty breathing. I then spent another four days of tests following which they concluded that I had CIDP. I was placed on prednisone, and neurontin, both of which seem to make some difference. Since then my pain and numbness have decreased, I can eat food without taste change, and I have some more feeling and muscel control in my hands. But I still have a really hard time walking due to balance and my feet being numb. I call it numbness but actually I do feel sensation especially sharp pain from pressure to some muscle. I have been in physical therapy since May, which seems to help a little, but the progress is so slow.

      Some of my frustrations are that I don’t know what to expect in terms of recovery. My doctor said It would take six months, I did not understand that he ment at least six months. At my current rate of progress it will take a lot longer. My family teases that I am obsessed with my exercises, but it is all I have control over. I have been reading other experiences and I am interested in the IVIG therapy. I also sometimes question my dx of CIPD thinking maybe it could be GBS.

      Thanks for being there and for any suggestions you may have.

    • Anonymous
      October 9, 2006 at 7:51 pm

      Welcome to the forum, I am glad you found your way here. First off, I would say that your dx is correct & that you do have CIDP & not GBS. The reason I can say this with almost certainty is your positive response to steroid therapy. CIDP tends to respond well to steroids, whereas GBS does not. Secondly, your doctor should not have given you any time frame as regards to recovery. Depending on the severity of your CIDP, you could possibly be facing a lifetime with this illness, although getting regular IVIG infusions could very well take away most of the symptoms you currently have. Did your doctor not tell you that the “C” in CIDP stands for chronic?

      As for dealing with the residuals, I used to think that CIDP was the absolute worst illness one could come down with. Now I realize that there are much worse things, even though I spent 3 years in a power chair with no use of my hands. I had a very severe case & am now content to walk with AFOs & take a cane when I leave my house. At least my hearing, vision, & even my breathing seem OK now. Even if you are not able to get rid of every residuals, CIDP can be a very managable illness to live with.

    • October 10, 2006 at 9:15 pm


      I am thrilled that you are responding to prednisone. I kept a diary when I first started taking the nasty tasting pills and it shows the wonderful improvements that happened each week. We are really lucky.

      Unfortunately one of the (many) side effects of the medication can be depression. I found it very helpful to talk with a mental health professional. You cannot make the challenges of CIDP go away through force of will – but you can adapt to your new circumstances.

      Be optimistic but also realistic. Be careful not to over exercise. Your body will heal at its own rate – it takes a healthy person 3 years to completely renew their myelin. But we are not healthy.

      Each victim is affected by CIDP differently – so no one can tell you exactly what to expect. But you have found a place where people understand what you are going through and are willing to share practical suggestions for dealing with the disease.