Guillain-Barré Syndrome

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I was diagnosed with Guillain-Barre Syndrome about 8 or 10 years ago, I just woke up one day and my legs were acting funny, I could walk but my legs had no power, I could even ride a bicycle but as the peddles came to the top I had no power to push them down, very weird feeling, I went for tests and the doctors hooked me up to a machine that sent electrical pulses to my muscles to make them activate, everything was fine, I've had no reoccurance of any kind and you could never tell that I have GBS, I'm not sure if this is related to GBS but around the time I was diagnosed I was told I would have to have B12 shots for the rest of my life, and if I didn't I may be in serious trouble. but just today I saw my current doctor and he wondered why I was still getting B12 shots. I'm 46 years old.

hwdward · Newbie Joined: 26 Feb 2008 Posts: 1

Hi,
I stumbled across this thread while doing some research on GBS. My girlfriend has been having health problems lately which started last November and resulted in weakness all over her body (no strength to really move). She was hospitalized and they considered GBS, but ruled it out because she still had reflexes. They have done all sorts of scans but neurology said she is normal. She subsequently recovered but recently fell ill again and is now paralyzed from the waste down to her ankles (still posses full sensation). Doctors still have no idea. We are not sure what has caused this but I am wondering if it still could be GBS? Any other theories? As some of you know the diagnosis for this disease can be tricky and hard to obtain. I am looking for a GBS specialist of sort. Does anyone know where I could find one in Ontario, Canada? Please feel free to e-mail me. (hwdavidward@hotmail.com)

Thanks
David

teenatoons1 · Newbie Joined: 27 Feb 2008 Posts: 1 Location: weston WI

My father was diagnosed with GBS in 1988. It was 9 months after my mother had died from Breast Cancer. His place of employment had been quite unsupportive. His boss stopped him one day and asked him what was more important? His wife or his job? The doctors told him that GBS is a nerve disease that has no known cause and no known cure. It literally eats the sheath off of the nerve and exposes the nerve in the body, acting like a frayed electrical wire. The feeling sensation will disappear due to the lack of communication from the brain to the extremity. My father's symptoms started in his legs. He was losing the ability to move them without using his hands. It got to be bad enough that my father, who never willingly sees a doctor, asked my sister to make an appointment for him. They had no clue as to what was happening. Lucky for my father, the "quack" dr. had an assistant with him that day, who was still in med school. He had just read about it. He told the dr, to refer my father to a nerve specialist. The nerve specialist confirmed the diagnosis and hospitalized my father immediately. By this time he was losing the feelings in his hands as well. The hospital tied him to a bed for 48 hours. He was NOT allowed to move any muscles if he could help it. Then he was sent to Iron Mountain, Michigan, to the VA hospital. There, he said, that he had the best therapists he could possibly have. They read the notes from the Dr in Wausau, WI, and worked with what they could. VA hospitals are not known for their medical breakthroughs, so Dad was fortunate to get this help. He said that the Dr. in Wausau, had told him, by tying him down for 48 hours, it forced the nerves to find alternate routes to send the signals. He explained that it was like electricity in a bad wire, it will find another way to continue moving. My Dad told me how they attached him to a machine that sends electical currents through the body to find a reflex point. This was a way to train the mind and body to look for this feeling so the person could be retrained to funtion agan. He said that the therapist had the machine up all of the way before getting his foot to react where Dad could feel any sort of feeling. The therapist walked away to do something, and Dad had to stop him. The machine had been up too high and it was smoking. The therapist told him that had never happened before, 'course they had never had it up that high before. My father is legaly paralized. The only feelings that he feels without concentrating is the pain of the disease. He was able to reach a functioning point where he is now able to walk and drive a vehicle and an old farm tractor. He is unable to hold down a job because he can not sit long enough to do a sit down job, and he can not stand long enough to do a stand up job. He has a hard time on his back for long periods as well. He said that he has a hard time on the ladder because unless he looks, he has no way of knowing where his feet are. He leans against the side of the ladder as he goes up, to feel where he is and to judge if his leg, and hopefully his foot, are still on the ladder. he is fortunate enough that he has the concentration to be able to do this while talking and doing figures in his head all at the same time. We have heard of other cases of the disease where it conitues to decay and eat the nerves until it kills the heart and or the brain. My dad said that he thinks he was saved because the intern knew to send him to a nerve specialist and the nerve specialist knew to tie him down for 48 hours to make the nerves find an alternate route. I know my spelling is bad, but I hope this helps in your studies.

staceynp · Newbie Joined: 03 Mar 2008 Posts: 2

TEENATOONS1-

I would love to have your email address. My dad is currently in the ICU here in NC and has been for 22 days... he was diagnosed w/ Guillain-Barre 21 days ago. I'm trying to find people who have gone through this experience, but it is very hard.... it seems like it is even more rare than they say it is.
My email is: staceynp@gmail.com. I'd love to hear from you.
Thanks,
Stacey

godskidalways · Newbie Joined: 02 Apr 2008 Posts: 2

Worst flu after a flu shot then heaved my guts out, feet felt like they were in a block of ice the most extreme pain imaginable in my feet and back.The emergency room had no clue either did my doctor.I actually got called a drug seeker by an intern.Because they couldnt figure it out I must be the bad guy.My husband couldnt stand me in pain plus the numbness moved to both hands.After 3 months of this he took me 2 hours away to another doctor wo diagnosed me.I felt better knowing but here I was no one knows what to do with me except treat the pain.I feel useless I stay in bed for days because of pain and weakness.I thank God it didnt move up my body more.People have no clue how devastating this disease is.Show your loved ones u care it does get depressing.My prayers go out to all of you or family members and friends.They need help someone to do housework or cook I would love to have that help.
God Bless You
tina @ godskidalways@yahoo.com

marci1_er1 · Newbie Joined: 11 Aug 2008 Posts: 1

Hi everyone! My father just died for GBS, on Jul 31 2008 in my country Honduras. He was in bed for 1 month,and I was there with him until he died. Everything started when his was driving, he complain about his eyes them his arm, them his legs, we took him to the hospital and that night he have stroke and after that the coma,he was connected to the machine, was so terrible see my father go through this because he never was sick before, he was so happy all the time, moving around, doing something, and this Syndrome came to be his enemy in a flash, like from no where, because the doctor never say hows my father gat the GBS. He never open his eyes again ,he never move his body, he never talk again. Can someone tell me more about how somebody can get GBS? Thank you.

Guillain-Barré Syndrome

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