Has anyone been diagnosed around 7 months ago? My torture still going on, GBS did affect almost whole of body, was in hospital/re-hab for 2 months, couldn’t walk for most of that time, can walk now with a stick, although limited, is still very hard. Legs still stiff and wooden, feet numb underneath and stiff. Feet get very swollen and sometimes still painful. Need my lyrica/pregabalin, pains come back if don’t take. Little bit of tingling still in side of hand and although mouth gone back, still probs with one eye, double vision etc if don’t wear glasses with prism made for me. Worse thing is dropped foot, worn ankle support for months but not much better. Do loads of exercise and now Pilates every day almost, definitelyŵ does help. Has anyone had similar experience?
Keep up the walking; gabopetin will help with the nerve pain. Most pain comes at night just when getting ready to sleep; but the alternatives (except for never getting GBS ) are worse. I am thinking that the tingling in the hands and feet will last a very long time; really enjoy being alive now.
I am coming up on 10 months since dx of MFS, affected whole body as well, face, eyes and mouth were hit the hardest. Still have lots of issues mainly in my hands and mouth. Legs and feet burn all the time.
Never took any drugs just deal with it.
Hi I was in intensive care for five an a half months then in rehab for another twelve months I got gbs severe severe enough to leave me in a wheelchair for good. I had nerve conduction done and the prognosis is I will never walk again. I still get tingling and some of my toes are stiff. I feel very alone. I lost my husband through it were getting divorced. U list my home. U couldn't have my dog with me as the agreement I liuve in don't have dogs. That's all due to gbs um very angry.
Hello Moo, I can't think of anything to say to you that isn't trite and probably inappropriate.. My daughter's GBS started January with total paralysis resulting from campylobacter virus. She has no movement in her limbs and is still unable even to press a button to call for help. They have just redone the conductive tests and results are not good., She is scheduled to have another dose of immunogloblin or whatever it is. She tells me she could cope if she can't walk again but not if she can't even move her hands. So I feel angry too. In fact dear Moo, the only thing in my daughter's life at present is fear that she will never get back home to her sons, fear that she will never be able to get home again - period. If you want to get angry, well do it my Dear, get angry in buckets and by the ton. It's good exercise and something about your life you control!
I don't have much by way of bedside manner but I do feel for you. I HATE GBS. Stuff inaction. But, there will be a really smart doctor on his/her way who will be able to regrow nerves.
Moo said:
Hi I was in intensive care for five an a half months then in rehab for another twelve months I got gbs severe severe enough to leave me in a wheelchair for good. I had nerve conduction done and the prognosis is I will never walk again. I still get tingling and some of my toes are stiff. I feel very alone. I lost my husband through it were getting divorced. U list my home. U couldn't have my dog with me as the agreement I liuve in don't have dogs. That's all due to gbs um very angry.
my husband got hit the 13th of march very severe. was on life support within two days. he has been in 5 hospitals. now he is in a rehab and nursing facility. now having seizures. still cannot move nothing maybe a little in his feet, but his feet are bent in. the nero guy said that he would not walk again. i dont know what to do for him, bc he seems to be getting worse both shoulders are out of socket. has anyone had these problems? what does he future hold? i am lost. i have been married to him for 41 yrs. he is my best friend.
xtine said:
Hello Moo, I can't think of anything to say to you that isn't trite and probably inappropriate.. My daughter's GBS started January with total paralysis resulting from campylobacter virus. She has no movement in her limbs and is still unable even to press a button to call for help. They have just redone the conductive tests and results are not good., She is scheduled to have another dose of immunogloblin or whatever it is. She tells me she could cope if she can't walk again but not if she can't even move her hands. So I feel angry too. In fact dear Moo, the only thing in my daughter's life at present is fear that she will never get back home to her sons, fear that she will never be able to get home again - period. If you want to get angry, well do it my Dear, get angry in buckets and by the ton. It's good exercise and something about your life you control!
I don't have much by way of bedside manner but I do feel for you. I HATE GBS. Stuff inaction. But, there will be a really smart doctor on his/her way who will be able to regrow nerves.
Moo said:Hi I was in intensive care for five an a half months then in rehab for another twelve months I got gbs severe severe enough to leave me in a wheelchair for good. I had nerve conduction done and the prognosis is I will never walk again. I still get tingling and some of my toes are stiff. I feel very alone. I lost my husband through it were getting divorced. U list my home. U couldn't have my dog with me as the agreement I liuve in don't have dogs. That's all due to gbs um very angry.