• Anonymous
      January 10, 2013 at 1:44 pm

      would like to find someone with like symptoms to communicate with…..i am into my 11 month …first diagnosed with gbs..still have symptoms of tingling and numb feet and hands….doesn’t seemed to have gotten any better in the last 2 or 3 months… stopped ivig for a while now back on for 5 months….have no idea if it helps…..i am 70 yrs. old and was in good health before…i am trying to get off  lyrcia because of weight gain and go back on neurotin…i cannot walk very far and am in pain most of the time…i am probably diagnosed with cidp now….since no one knows much about what to do with a patient like me..they let me do what i think helps…….which is nothing.

    • GH
      January 11, 2013 at 3:18 pm

      Sometimes its difficult to tell whether there is improvement, because the the rate of progress of nerve healing slows down over time. A year and a half ago, several months out of the hospital, I could walk with a cane, but anything more than about three blocks was too difficult. Now I walk without a cane and can walk a mile if I need to (although that’s not something I want to do). Waiting for nerves to heal is like watching grass grow, only slower. My feet still hurt and may hurt forever. I’ll live with it. I am 65, by the way.