tell tale signs of an impending attack

    • Anonymous
      September 12, 2009 at 12:47 pm

      I had been in remission for two weeks. total remission. for the first time since may. before I had the GBS I had deep bone aches like frost bite pain, excruciating, all over my body. 5 years ago the night before an attack I had the same pain but only in my legs. last night I had it again so i knew that today was going to be bad and sure enough it started in my toes and is speading upward, the worst attack in 5 years. I am sorry but no one is ever going to convince me that this is an unrelated neuropathy to the GBS.

      do any of you have pre indicators, tipping you off to a bad flair up?

    • Anonymous
      September 12, 2009 at 3:16 pm

      My balance gets staggeringly worse and fast!
      My vision starts to get really blurry, like I need a change in my lenses’ prescription. The vision factor went up and down for two months before an ‘onset’ which ended me up in the hospital with all the pain you were talking about and more!
      It is just something to cope with and recognize the signs, then deal with them. No sense stressing [even tho your brain is in major panic mode] but take it as it comes. Know when to call for help-either a booster dose of IVIG or Prednisone or whatever but try to think clearly to AVOID worse things happening. We have the brains? But I know from experience that sometimes the pain over-rides a lot of common sense approaches we should take.
      Hange in there! Tho? Gotta tell you I hate such things happening on the weekends? As little gets done for you medically until the week.
      Good thoughts in the meantime!

    • Anonymous
      September 13, 2009 at 1:30 am


      Remember that CIDP is the chronic form of GBS. Both CIDP and GBS act the same on the nerves. GBS is usually very acute and one-time. CIDP can be acute, but normally is not as severe, but it occurs over and over.

      Your feelings that they are similar are exactly correct. Remember how you felt prior to the “attack” so you can relay it to your Dr. I would also try to contact the neuro and let him/her know about your change in condition. If you can get some level of treatment now it will lessen the severity of the relapse.

      Good Luck
      Dick S