Question about symptoms

    • Anonymous
      July 12, 2006 at 6:54 am

      New to this and CONFUSED!

      So for months now my hands, feet and face have been pretty numb, even my arms and thighs to a degree, but for the past day or two, I am noticing that when I lightly touch the backs of my hands and the lower part of my face, I can feel it again — its unmistakable! Is this normal? I have had no treatments so far, but I did start taking B12 about a week ago. Doc didn’t laugh at me outright when I told him this, but I SWEAR he rolled his eyes — lol.

    • Anonymous
      July 13, 2006 at 2:03 am

      Hi I am a chronic relapser and it is not unusual for me to have loss of sensation feet and hands over a period of 2-3 weeks and then for the feeling to return. I am not on any treatments. In the past I have had IVIG and then plasmaphoresis when my symptoms persisted and I also had paresis( muscles wakness) – hate it when I cant hold my cup of tea or hair drier:eek:
      We are all differnt and what I have learrned each of my “attacks” (CIDPsymptoms) dont always follow a predictable pattern Grr…
      I am lucky I have long periods when I have no symptoms at all:D

    • Anonymous
      July 13, 2006 at 5:00 am

      Skye, how long have you known about/lived with your CIDP? Its interesting to hear that you aren’t on the IVIG maintenance. MY doc suggested that this could be an outcome, but we’d just have to wait and see.

    • Anonymous
      July 13, 2006 at 12:44 pm

      It is not so weird to take vitamin B12. Low levels can cause neuropathy but I don’t know if there is any connection to CIDP. Earlier this year I had to see an oncologist/hemotologist to rule out any malignancy The first thing he did was to tell me to start taking the highest dosage of B12 I could find even so my blood level was normal. He told me he and his collegues were the ones to set the standards for B12.

      A few years ago when my diagnosis was P.N., and not yet CIDP, a neurologist in Thailand prescribed a special B12 made in Japan, very expensive. I think it was supposed to get absorbed better. Forgot the name of it. Only took it for a while.