A New Wrinkle

    • Anonymous
      March 1, 2007 at 11:01 pm

      I had an episode earlier this week where my symptoms suddenly worsened. Numbness increased, unable to keep my balance or walk straight, vision problems, numbness in my face and my wife said my right eyelid was drooping. I had never had an acute onset like this before and was probably at my worst.
      Went to my neuro today and went through the usual exam, EMG’s, etc…
      Also blood tests, a skeletal series and an MRI scheduled for Monday to rule out a few other things.
      The new diagnosis-not CIDP, but neurosensory neuropathy.
      Still an autoimmune, but the docs say I don’t really have any definitive demeyelination and my symptoms are more sensory than motor.
      The treatment is still IViG, the prognosis similar, and still alot of the same questions.
      The doctors seemed pleased to be able to see me at the most symptomatic to help with this current diagnosis, but for me it doesn’t really change what we all say-I know there’s something wrong, what can we do about it?
      Starting to feel better and get back to “normal.”

    • Anonymous
      March 2, 2007 at 6:33 am


      What a swithch. It is good to hear that IVIG helped and that you are doing better. You hit my concerns I don’t real care what they call it just give me some relief. I would be interested in hearing more about what you find out on the autoimmune connection.

    • Anonymous
      March 4, 2007 at 12:16 pm

      My question is, is do you still have CIDP or are they changing your diagnosis..??? Is this on top of the CIDP..???

      Good luck with your treatments… 🙂


    • Anonymous
      March 5, 2007 at 10:59 pm

      I will be talking with the doctor later this week, but from what he has said so far they are changing the diagnosis. I never fit a clear CIDP diagnosis, but based on the majority of symptoms and my response to IViG, that was always the working diagnosis.
      There doesn’t seem to be any name for this or any treatment other than the IViG and the same prognosis-we don’t know what will happen.

    • Anonymous
      March 6, 2007 at 1:32 pm

      Hi DonMo60,
      Did the doc think this new dx is due to a progression of what might have been CIDP? Whatever the case, thank God the IVig still works! My prayers are with you. Maybe this new dx is curable. It can happen.:D