Atypical CIDP

    • September 27, 2014 at 11:34 pm

      Hello, I am a 32 year old female diagnosed about 5 years ago with CIDP. My symptoms were first discovered around age 16 but it is suspected that were present in my elementary school years. My personality is one to overlook things like that. I have significant weakness in my arms, neck, and left leg with only some response to IVIG. My physician believes that my nerve damage was present sooo long before treatment that it is very unlikely I will see a full recovery. Anyway, I can walk (not up stairs too well, and I fall often) and manage to do most things with a little adjustment. Just wondering, has anyone else experienced a progressive CIDP originating in childhood?

    • jk
      September 30, 2014 at 12:12 pm

      You may receive more replies if you post directly to the CIDP Forum, not the main forum.

      It is true that chronic (long, long time) nerve damage, attributable to Chronic CIDP, leads to irreversible muscle atrophy and wasting. At least it has been, and continues to be, true in my case.

      Not only that, but there is a good likelihood that my treatment with Imuran, generic azathioprine, immune suppressant has permanently damaged my immune system. Specifically white blood cell and platelet production.

      My opinion is that all CIDP patients would benefit from finding a fully qualified neuromuscular CIDP specialist when it comes to diagnosis and treatment.

      Others, of course, have varying opinions.

      contact the GBS_-CIDP foundation for help.