My daughter has been hospitalized for over 10 weeks with two set backs. The last one not as severe as the first. She is in rehab and progressing well with arm movement and some leg movement. Great head movement and able to enunciate words quite well. On 14 hours off the vent a day now and doing well. Feels she can go on her own. They are taking it slow. The Doctors just told her they do not know how much she will recover. Has anyone not walked as a result of GBS? She is 33 and would run for fitness. Had been told being young and fit prior to GBS she would recover faster.
Feels like a depressing topic for her when things ware finally looking up. Also talked of sending her to subacute in a few weeks.
Hi, i have GBS, i feel your daughter is possibly CIDP if she is having relapses, hopefully the relapses not as bad as the first attack. She stands every chance of being able to walk, run etc again as she is young and fit and will fight to walk again. It can be quite a fast recovery at the beginning but then slows very much. Just keep a positive outlook and your daughter will too. She will have bad days and will need a lot of support but the outlook is good. Best wishes and love xx
Just shy of four years since my attack of GBS and still can’t walk. I’m not gonna give up, I was running daily prior to this and I’m determined to do it again. Hang in there.
I consider myself young and fit - and did walk again at 5 weeks. It has taken 6 months for it to feel right - nerves in feet are still recovering. The best thing was a great therapy team - both inpatient and out patient. They will be able to wake up the nerves and get her moving again with all kinds of tools and exercises. Push for acute therapy/rehab because in my case, the three hours a day was key to getting moving faster even though it was tiring. Sub acute only requires one hour a day of therapy. She is lucky to have a Mom advocating and learning for her. Stick with it - the waiting is one of the hardest parts.
my husband age 61 got gbs on wednesday march 13, 2015 by that saturday he was on life support. they gave him 6 doses of ivig and had to put in a pacemaker. he is moving his feet and right fingers that is all in almost four months. the rehab people told me today that he may not ever walk again or come off vent. this disease is has effected me so much we have been married for 42 yrs. he is my life. i visit him everyday and it just breaks my heart more and more. has anyone had it this bad?
my husband age 61 got gbs on wednesday march 13, 2015 by that saturday he was on life support. they gave him 6 doses of ivig and had to put in a pacemaker. he is moving his feet and right fingers that is all in almost four months. the rehab people told me today that he may not ever walk again or come off vent. this disease is has effected me so much we have been married for 42 yrs. he is my life. i visit him everyday and it just breaks my heart more and more. has anyone had it this bad?
Try not to listen to negative people - even doctors don't know what he can accomplish with time and prayer. Try to stay positive when visiting him - my family did with me and it made a huge difference to know they believed in my full recovery. It is hard to see him that way, but he is moving and that will get better with time. Read and talk to him like he is normal because mentally he is and needs you very much. Get enough rest between visits and schedule other friends, pastors, relatives to fill in for you if needed - this is a marathon not a sprint and will be exhausting for you at times. Please keep us posted and know we are here for you.
Judy
jan said:
my husband age 61 got gbs on wednesday march 13, 2015 by that saturday he was on life support. they gave him 6 doses of ivig and had to put in a pacemaker. he is moving his feet and right fingers that is all in almost four months. the rehab people told me today that he may not ever walk again or come off vent. this disease is has effected me so much we have been married for 42 yrs. he is my life. i visit him everyday and it just breaks my heart more and more. has anyone had it this bad?
Jan,
I recovered much quicker than your husband and will agree that time and prayers can move mountains. The one thing I had wished my family had done during the time I was immobile is stretching my hamstrings/other muscles that I wasn’t using. I was only immobile for 3 1/2 weeks, but it is amazing how fast your muscles begin to atrophy.
So many tragic stories...each of us having different expriences of GBvirus. There's no quick fix..of that i am sure. Been 7yrs since i got paralysed by it...and have recovered much since but without recognition (because of the small minded town i lived in) and without support. As a result left me permanently disabled with some neuropathy throughout my body...lots of atrophy in muscles and paralysis of some of my throat muscles have made life difficult to say the least. But i am living independently now...some days are harder than others...but i get by and life is good.
As for the legs...well, mine have never recovered even tho i walk them a few hours or more a day as best i can. Gng to the shops is good therapy for them but by the time i get back to my car...they can barely move! Still ifeel a sense of accomplishment. I have found that you have to accept that some days are gonna be better than others. I pace myself and i only go to the shops every few days to give them a good stretch...its a big workout for me so i take a couple of days off in between to rest them too.:) I can tell from reading the replies on here...thereis no guarantee...we all have experienced different recovery levels, depending on the support we got and the severity of the GBvirus we have.
I read somewhere here that physio helps and that they can re awaken the muscle...is that true? I have never been offered physio...quite frankly...didn't think it wld help anyway asi have no mobility in my knees and to bend them is extremely painful...
I sincerely hope your daughter bounces back from this alot better than i did...she has you as amazing support behind her and that makes all the difference i believe. Keep giving her all the support you can cos in the end it will be that that will give her the best recovery.
Of course she will : it’s just a matter if time with lots of patience : the best mantra is to do Physio therapy dedicatedly : and she will be fit & fine : god bless her : the second mantra is to remain positive and happy : that works wonders ::
All the best to her :
Jan, I recovered much quicker than your husband and will agree that time and prayers can move mountains. The one thing I had wished my family had done during the time I was immobile is stretching my hamstrings/other muscles that I wasn't using. I was only immobile for 3 1/2 weeks, but it is amazing how fast your muscles begin to atrophy.
I just lost the note I was writing so if it was sent that is why I am repeating some of it. Thanks for all the input. So nice to have a sounding board. In answer to a question about my daughter still having treatments and the answer is no. She has had a total of 9 plasma exchanges and 12 IVIg’s. Her 2 relapses in the hospital coincided with a UTI. After the second relapse she had a specialist follow her and run more tests to rule out other possibilities. We are hoping that she had not reached her plateau and now has. We were told if she has another relapse it could be CIPD. I understand they would do steroids for that.
Right now she continues to improve and she feels different than before. Up to 24 hours on just oxygen support and hope to be off vent in a week. Also doing swallow study this week. Starting to drive a power wheel chair. We are disappointed that she cannot stay in acute rehab. In the next couple weeks we will have no choice but to send her to sub acute.
Her left eye was lazy for a while after acquiring GBS and then developed an ulcer. Her outer eyelids were sutured. After stitches taken out her left eye is still partly closed. I am wondering if that is a muscle she just has to work on like the rest in her body.
Thanks to all of you who have gone through this but continue to help others through your discussions. I just can’t imagine going from being an active person to being paralyzed in less than a week! I am glad my daughter will have a local group to join. Only someone who has gone through this awful syndrome can understand what she is going through.
I was 66 when I got it and the same 4 days to life support. I am not entirely sure of all the medical terms but I had 17 plasma blood exchanges and not certain about the ivig. I was on a vent for about 6 weeks, slowly getting weened off it (scarey, it feels like you are suffocating when they take you off the positive oxygen). As soon as I could I did finger excercises and moved my toes, then my feet. My wife was a big supporter and kept at me to be positive, had a ton of visitors in the 7 1/2 months of hospital care. Had a pacemaker installed 2 weeks into the GBS and a vascular bleed 6 weeks into GBS. Walking (sort of now, a zombie walk without a cane) but at home and can get around the house and yard with a 4 wheel walker. I was lucky in that I was retired and bills weren't an issue and that the Canadian health system is as excellent as it is. Have your husband keep on working, I think it will help him. Good luck.
jan said:
my husband age 61 got gbs on wednesday march 13, 2015 by that saturday he was on life support. they gave him 6 doses of ivig and had to put in a pacemaker. he is moving his feet and right fingers that is all in almost four months. the rehab people told me today that he may not ever walk again or come off vent. this disease is has effected me so much we have been married for 42 yrs. he is my life. i visit him everyday and it just breaks my heart more and more. has anyone had it this bad?
As there are no benchmarks, it's not possible to give a definitive yes or no. HOWEVER... the doctors who resuscitated me said that I'd remain a quad. Two years later I can toddle a few metres with the help of a rollator. I used to lie in bed and send messages from my brain to my toes and fingers, willing them to move. Eventually, they did! Your daughter must never give up hope.
I agree completely; medicine can only go so far the rest is up to the patient. Keep trying!! Pre GBS will probably be the old way; the new way will not be as easy or familiar - but life will have a new meaning!!
LouiseZA said:
As there are no benchmarks, it's not possible to give a definitive yes or no. HOWEVER... the doctors who resuscitated me said that I'd remain a quad. Two years later I can toddle a few metres with the help of a rollator. I used to lie in bed and send messages from my brain to my toes and fingers, willing them to move. Eventually, they did! Your daughter must never give up hope.
I am 30 yrs old and i have two kids. I got sick after 2 IVIGs. I fell on the floor and could barely move after 10 days of walking for couple of steps. I also had double vision and difficulty swallowing. The doctor believed I have CIDP and he started on 60 mg dose of steroids (prednisilone) in the morning. I used to take them at 6 am with yogurt and go back to sleep because I learnd that your kidney produce this in the morning in approx 10 mg. it helps the nerves get better but not grow quicker. I took them from april-june with the doctor reducing the dose every week. With constant physiotherapy and occupational therapy i am able to walk with albow crutch.
I hope your daughter get well soon and always seek second opinion. I have seen at least 4 doctors and one of them who gave me the second IVIG was against the idea of steroids and was planning to give me plasma exchange if my health relapse. I came to london and the doctor suggested the steriods.