• Anonymous
      July 15, 2006 at 7:52 pm

      First time in 43 years that I have been able to communicate with people that have been diagnosed with GBS.My illnes started 7 months after my first beautiful daughter was born.I had a cold, sore throat, trying to sew a suit for my brother’s wedding. Missed the wedding, spent 8 months in the hospital , no treatment to stop its progress.A super physio staff and nurses never let me know how ill I had become.2 more years of bi-weekly therapy some hand and feet braces for night wear and different light braces for day wear.When I came home I still wasn’t able to get up when I tumbled to the ground.Watching my baby one day when she was brought to my home for a visit, I learned how babies got standing again.There were many tumbles, trying to get mobility. Balance was like a baby walking. Weight on one side, swing other leg , hold knee straight. then swing other leg, hold knee straight. I still pay attention to my legs to walk.
      43 years passed, studied, taught , 3 children , on a farm,and always wary of a fall. Nov. 29 2005, our small church group had our Xmas dinner in an auditorium which had little heat and a newly installed cement floor.My husband had a CB radio in our car, knew where I was especially in cold weather and I never spent enough time to feel the cold in my legs.This winter my legs were very cold to just below my knees where the paralysis had previously damaged my lower legs the most , I used to hold my hand on the side of my leg and feel cold on lower part of my hand and normal body temperature on upper part of my hand.Back to Dec 2005.The burning
      pain in my feet and lower legs with sharp pain like chill blanes {after skating} with an unrelenting continual persistance.Pain pills, valium helprd some.A foot bath with hot water and epson salts and vibration on bottom on my feet ofter settled the discomfort.
      March 2006 , I was sick to my stomach{flu} one night with a temperature for next couple of days.The first morning I tried to get out of bed my legs would not hold me. I decided to use my hands to move around the bed , hold on door hand and a stand. then used a walker I used sometime.In about a couple of days when I tried to walk I seemed to be breathing hard to get enough air. By Fri I went to Dr to see if I had bronchitis. I failed to tell her my legs were so weak.Sent for breathing and heart tests and later had an angiogram done … no problem with my heart.At this time the hot humid weather or lifting something makes me puff to breath for a few minutes, I have puffers to help lungs, tire very easily and legs are not like they were, I have an appontment with a neurologist.This feels very much like a milder attack of GBS which I’ve read rarely occurs the second time.Any advice, suggestions,information? Thanks for any help and encouragement.

    • Anonymous
      July 15, 2006 at 10:24 pm


      I think it is so wonderful that you have posted on the forum, and I am so glad you found us – Welcome! There was a ton of information on the forum before it “went down” a few months ago, we lost quite a lot of that info, but most of our members are back with a wealth of information. After 21 years I believe I suffer from ‘post gbs’, with terrible fatigue, weakness in limbs, out of breath at times, burning and cramping pain in my hands and feet that began April 05 when I thought I had had another ‘attack’ of gbs. Turned out I didnt, but I hadnt felt those symptoms for 20 years. Neurologist hadnt the slightest idea about gbs, and it wasnt until I joined the forum that I realized I was not alone, and that there are gbs’ers out there suffering decades after onset.

    • Anonymous
      July 15, 2006 at 10:54 pm

      hi hbr & welcome,

      make sure the neuro does an emg/ncv. this will let the neuro know if you are having a gbs attack. if so, make sure you get ivig asap. keep us posted on this thread. take care. be well.

      gene gbs 8-99
      in numbers there is strength