• Anonymous
      May 24, 2006 at 9:13 am

      I am no longer progressing. I have been off IVIG’s and all medications for the syndrome for 2 1/2 yrs. now. When the IVIG’s were stopped, I asked my neurologist what signs I should look for if I needed it and he said I would know, it took me about a year to develope that instinct, but my gut feelings do tell me that I’m not relapsing.

      Now, for my question, is the degree of numbness I feel something to be concerned about? Sometimes I think I get normal numbness over syndrome numbness. The numbness is 24/7. I can tolerate it during the day by having busy hands and busy mind, but my numbness can be severe at night. Is there any kind of a medication that works and will cut into the numbness? I have to be careful about what I take though because I have two ulcers.

    • Anonymous
      May 24, 2006 at 10:57 am


      Have you tried Neurotin. Maybe some of your numbness is actually pain if it is that bothersome to you.

      Pam K.

    • Anonymous
      May 24, 2006 at 1:38 pm

      I am one of the few, or maybe the only one, who never had “PAIN, pain”, so I was never prescribed any. My neurologist told me that neurontin would not relieve numbness, so he never recommended it.

    • Anonymous
      May 24, 2006 at 2:13 pm

      Hi, Liz.

      I went for years with no pain, only to have it start a year ago (although it’s never been very bad). I tried gabapentin (neurontin) and found that in my case it didn’t do anything but make the symtoms worse. It certainly didn’t help with numbness; neither have IVIg or steriods. But I’m considered to have a progressive form of CIDP in the sensory nerves (with a relapsing form in the motor nerves), and from what my neuro tells me, nothing really helps in the progressive forms of the disorder.

      So much fun!


    • Anonymous
      May 24, 2006 at 3:13 pm

      I am no longer progressing. .[/QUOTE]

      Liz, this comment of yours gave me a heads-up. Have your symptoms ever been of the relapsing/recurring kind or have they always been progressive until they stopped? I wonder if this might be possible for mine, too. Mine started with mild numbness in my toes and have steadily progressed over the past five years. Now the numbness has spread to my hands during the past few months. 😮 Fortunately, like you I never had any pain.

    • Anonymous
      May 24, 2006 at 3:55 pm

      I would have to say I was in the PROGRESSIVE pattern of cidp because I never really went through FEEL BETTER/FEEL WORSE…..FEEL BETTER/FEEL WORSE. Except for the progressive years, I basically always felt the same and I went through about 1yr.+ feeling like nothing but water was being dripped into me, because I had stopped progressing

    • Anonymous
      May 29, 2006 at 5:05 pm

      Liz, thanks for the reply. I am still learning to find my way around this forum. Didn’t know you answered until now. Finally found out how to subscribe to a thread.:D

    • Anonymous
      May 29, 2006 at 5:22 pm

      Hi, Liz! I have numbness especially in my toes. When I go to bed I always take paracetamol, I don´t know the name in english, but it helps a lot!


    • Anonymous
      June 4, 2006 at 1:54 am


      You know that I am also a sensory loss person. I was led to believe (from my neuro) that it was easier to recover motor strength than it would be to recover from numbness. I too am progressive in my losses, whatever I lose I don’t get back. My losses began almost totally sensory, but have progressed to motor loss as well.

      I think your neuro is right, that you will be able to tell if you “relapse” You have been through the process and would recognize the return of symptoms. I suppose it is possible that you have gotten back all that you will ever get back. Or that maybe the remainder will just take more time.

      Remember how bad it was for you? Look how far you have come up to this point. I remember how happy you were when you could get up, stand, and take those first steps again. Rejoice in your gains, take some time and see just where you are. Then you will be ready for more improvements. They may just be smaller gains.

      Take care friend
      Dick S