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gailcalled's avatar

Has anyone here had Guillain-Barré Syndrome or know someone who is dealing with it?

Asked by gailcalled (54579points) March 31st, 2009

A young member of my family was suddenly struck; she is fit, healthy, athletic and 45. Released from hospital today, she can walk only 20 steps without great fatigue. Any tips?

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10 Answers

casheroo's avatar

I do not know anyone, but my thoughts are with your family.

augustlan's avatar

My step-father had it. He was pretty much paralyzed for a while there… it was scary for all involved. He did eventually regain all function and his stamina returned to normal. I don’t remember specifically what steps were taken to get him better, but I know it was a slow process. Tell her to be patient with herself, and to ask for help when she needs it. Sending good thoughts your way.

asmonet's avatar

My friends husband, Matt Kazam is a stand up comedian, he got it after receiving a flu shot last fall. He is still on the mend, they almost didn’t catch it in time and was told he might have up to a year before he feels ‘normal’ again. He hasn’t beeen able to tour, as standing takes it out of him. But within a week or so he was able to take a step or two, now it looks good, maybe a few more months and he’ll be very functional again.

Galina was torn up about it, but what I got from talking to her was that it was hard, especially because she became his caretaker, but patience was the most important thing. Patience on everyones part.

flameboi's avatar

Two great friends have battled the syndrome, one of them told me that the best medicine ever was the support of his friends and family :)

gailcalled's avatar

@asmonet: Do the doctors equate the flu shot as the precipitating factor? My almost daughter-in-law had a gyn. surgical procedure about four weeks before symptoms presented.

Luckily she and her husband have good family support – it will be necessary for the care and tending of three daughters – 9,7,and 5.

Thank you, everyone. Maybe the ability to walk 20 steps is cheering news and not depressing.

augustlan's avatar

The step-dad had had a flu shot shortly before he came down with it, too. He won’t get one again, but I still do.

asmonet's avatar

@gailcalled: Yes, they said it was definitely from the flu shot, he had it 10 days before he was rushed to the ER with ascending paralysis. He’d lost control of his hands, face, tingling, numbness, drooling – the whole nine, it was pretty much word for word how it’s listed on Wikipdia here from what I was told.

Twenty steps is fantastic news! Matt couldn’t do that for I think a month or more.
I’m sure she’ll do great, I wish you all and especially her the very best.

loser's avatar

My ex had it when she was in her early 20’s. She had to be on a respirator and was in the hospital for 6 months. So sorry to hear the news. I know it’s rough. Hang in there…

jca's avatar

I had it this past June 08. I was 42. It started with tingling in my toes (Thursday), and then weakness within a day. Weak to where i could not lift my legs to put them on a chair across from me, had trouble with steps. by Monday I was wobbly and could barely walk. Tuesday night, went to the ER and was diagnosed with sprained calf muscles, told to stay home 3 days. Luckily I took my one year old daughter to my mom’s and told her to keep the baby a few days. Fell in the kitchen the next day, could not get up. Had to pull myself onto the bed. By Friday, I fell in the shower and could not get out. When I gained some strength and energy, after about an hour, I crawled to the bed but could not pull myself onto it. Had to call a friend to come help me get on the bed. That night, another friend took me to another ER. I walked to the car but then could not get out of it, and could not take the one step between the wheel chair and the hospital gurney. Between Friday and Saturday I had the tests and was diagnosed. Had the 5 days of IVIG, and then 3 weeks on the rehab unit, which was basically three hours of physical therapy daily. When I left the hospital, I was still weak but improving every day. Stayed home from work July and August, going to outpatient physical therapy. I have no symptoms any more. How did I get mine? My one year old (at the time) baby had a virus and everyone got it, except me, which made me proud of how resilient i was. However, when I got the GBS, they said it was probably how my body reacted, since it’s an auto-immune disease. I probably could have brought some kind of legal action against the hospital that i first went to that diagnosed sprained calf muscles, but i decided not to. I did however, write them a letter and told them, and since I had been there for my outpatient PT, the ER director waived my insurance company co-pays.

This experience taught me a lot about appreciating life and that life is short. On another post, I talked about the great experience I had in the hospital. I met great people there, and since I was not in pain, it was a fairly enjoyable experience.

dSchmick's avatar

My grandma has it now, and has lived with this for over a year now. She decided last week while she is of sound mind to have the ventilator turned off. She has a trach and it paralyzed from the neck down. I wish there was more I could do for her!

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