AnonymousDecember 12, 2007 at 2:12 pm
I’m new at this so I really don’t know too much about how this all works.
I just have a question. I was diagnosed with GBS in Dec. 2005. I was very lucky that my neurologist knew what it was and started me on treatments right away. He has since moved away and the neurologist that I have now says everything I have is from stress. I am on neurotin. I still get numbness in my legs and lips. What I need to know is has anyone ever had a seizure that somehow was from the residual effects of GBS. Sunday at a Christmas dinner the choir was singing and my right eye started twitching and my lips went completly numb. Before I knew it I was on the floor and my whole body was twitching. It lasted for about 10 or 15 minutes. They took me to the hospital but I wasn’t able to talk for about 4 hours. I just couldn’t get the words to come out. My neurologist says it’s stress. I was just wondering if this ever happened to anyone else.
AnonymousDecember 12, 2007 at 7:39 pm
“Stress” is what they say when they really don’t know. I am not saying that stress cannot make residuals worse, but stress is NOT always the reason for our weird residuals. There are a LOT of us here having strange things happen to our bodies with no apparent cause, other than our GBS/CIDP histories.
AnonymousDecember 12, 2007 at 11:29 pm
angie, We had GBS around the same time. I had times when sound would set off my body into vibrating and I did not faint or have seizures they they would completely drain my energy. Once I was under the bells in the steeple at church and it was noon! I just froze in place and my friend stood there with me talking and holding my hand…..her son had GBS 8 years before me and she had the sense to just let me handle the noise. Another time I was in the pits at the race track and all cars were shut down. I heard the winner of the final race start up his car and did not think anything about it. He come around the corner and reved the engine. It set off actions that I can only say made me spring straight up off the ground 6 inches and my neck retraced like a frightened turtle. Again I just stood there until I could move and staggered toward my car and friends come running because they knew that I was in trouble. Zapped the energy right out of my body. I had been asked many many times if I was light headed or dizzy with GBS and I never had that happen either. But many times I feel if I had not stopped and let my head and body stop vibrating to the point it made my vision shake so bad I closed my eyes so I did not get sick at the stomach. When the vibrations were their worse they took my breath away. I learned to relax and let them slowly come back. Stress did make it predictable when I was at the checkout counter and could not find my check book or credit card or money quick enough. I got stressed out that I was holding up traffic and my handicap would be noticed that I was not able to feel money in my hands. I still can not feel if it is there I have to watch myself count money and fumble with it and coins. I try and grab them but I am slower and not being able to feel paper money makes it hard to count! But I am getting better slowly!
AnonymousDecember 13, 2007 at 9:52 am
Thank you so much for your replies. I see my neurologist today and I want him to know that I’m not the only person that has things happen to them even though it has been 2 years since I had GBS. When we asked him could this somehow be connected to the GBS, he said no he had never heard of this happening to someone before. He wants me to see a counselor which I am going to do. Just to have someone to talk to about all the stuff you feel after GBS I think will be a great help if they will believe you. Again I thank you so much for taking the time to reply.
AnonymousDecember 13, 2007 at 10:12 am
angie I hope you have as nice of a doctor as I did. I have not noticed any posts either but I also don’t know all the variants of GBS. It really does help to talk about this and coming here will help also. There is always new research going on around the world that might bring you in contact with someone else that has the same questions as you have. We have a tendancy after GBS to blame every itch, twitch and pain on the GBS. It is hard to separate things some times. It is better to question the professionals and keep them on their toes too!
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