Are symptoms of a relapse the same as the original attack…???

    • Anonymous
      February 9, 2007 at 11:12 pm

      Hi group…!!!

      I am trying to figure out if I am having a relapse… My first attack (7/2005) involved excruiating pain in my arms and back of my legs which then moved to my hips and then up my back… I became progressively weaker and weaker with 5 to 8 weeks… When I was diagnosed in Sept, 2005 I thought I was regaining some of my strength… I slowly began to climb stairs and turn keys in locks, etc without having any treatments except some gabapentin for the pins and needles in my hands…

      I seem to have stablized as far as strength goes, but I tire very easily… It is becoming harder and harder for me to continue teaching (special education)… Could this be a relapse even though the symptoms are not the same as my original attack..??? How can a person tell if they are having a relapse..???


    • Anonymous
      February 10, 2007 at 12:39 am

      I am no doctor, but I would say that you are probably not having a relapse. Fatigue is common to the majority of us, no matter how hard some are hit, or even those not hit so hard. I think you have an extremely demanding job (used to teach English before I got CIDP), and just need to rest as much as possible. I believe there would be signs of weakness if you were relapsing…

    • Anonymous
      February 10, 2007 at 11:12 am

      Hi Aimee,
      Just keep in mind that we are not doctors and cannot answer as such. I can speak from what my viewpoint is. I am stable, I have not shown any sign of relapse/progression for a little over three years. The last time I saw my long-time neurologist I asked him “how will I know if I am relapsing” and he said I would just have to know myself!!! The first year of being stable was kinda a “panic” year….. if my numbness increased, if I got a muscle cramp, if it took two oooomphs to get myself up, if I got so tired that I just wanted to close my eyes and rest….WERE THESE RELAPSES??? Then an instinct just clicked in and I “just knew myself” what I should look for—–the FALLS starting again, my feet turning sideways, the numbness so extreme on a daily basis that I felt like cutting my feet off—–these are the things that stopped when I became stable and that’s what I look for.

    • Anonymous
      February 10, 2007 at 12:56 pm

      How well I remember the intense fear of relapse ๐Ÿ™ And there are still times but they aren’t as frequent now. It is a form of post traumatic stress. We are so aware how life can “change in a moment” and never be the same again. It can be very hard to accept that we need more rest ~ we never get enough! It seems to be the “nature of this beast”. You are in a profession that demands a huge amount of energy. Many “perfectly healthy people” would begin to struggle with what you do and ‘burn-out’ is high.

      When you are so tired, you are still demanding of your nerves to perform as if they haven’t been hurt. This may be slowing down your healing but there are no studies, that I know of, to prove it. But, just the personal experiences of those who live with this on a daily basis speaks volumes. I offer this from my experience of GBS. The tired has [U]never[/U] gone away even after 12 years. . . I wish you well.

    • Anonymous
      February 10, 2007 at 2:01 pm

      Liz…it was your statement about being in remission for so long that inspired me to write… I just don’t know if I should be looking for the severe pain I had in my arms and legs or if that was when the myelen was first being destroyed and it was so severe… Or will I just begin getting weaker or will I get the pins and needles that started in my fingertips (both hands) and tips of my toes (both feet) and began gradually to spread upwards on all four limbs at about the same rate… I keep thinking that I get so tired that I must be having a relapse, but I just wondered since the other symptoms were not happening…

      I think you are right, Judi and Pam, about the job just wearing me down so that I feel as weak as I felt during the depth of my first attack…just without the other symptoms… I DO get pins and needles if I stand too long or if I type too long or try to write…any labor involving my hands brings it on… Oddly, walking is not that much of a problem… I especially like to walk in the grocery store holding the cart… I think I get most of my exercise there… Walking with a cane hurts my back for some reason… I guess I just need to bring a shopping cart to school and I can carry all my due prodess files, papers, books, and manipulatives in it… ๐Ÿ™‚

      Thanks everyone for the comments… You have helped to ease my mind…what I have left of it… ๐Ÿ˜€