Rapid onset vs. slow onset and recovery time

I pray for you and your Dad. Am much older than he, GBS hit me suddenly 18 mos. ago, couldn’t us arms or legs, taken to hospital, given IVIG. Had much OT and PT, have made good progress and hoping for more. Don’t give up, he will improve.

Peggy

Erin,
You mentioned that he was paralysed from the cheeks down at the beginning of your post. Is that correct? If so, he has made improvement. You also said he can move his lips some and move his head from side to side, even if only a little. I was completly paralysed last year with my GBS. It sounds to me like he is beginning to get better. Since age at onset does seem to be a factor in recovery, I wouldn’t be very upset at the slowness of his recovery. It took me a little while after I was able to move my head to be able to come off the ventelator. It will take your father some time as well. Be encouraged that it seems he is beginning to recover. Keep encouraging him. Celebrate every tiny improvement!

Tonya Correll

I mentioned in a post just today that i had been told that rapid onset often means a rapid recovery … i am sorry if i misled anyone. Like i said i am no expert (even the so-called experts dont know much about GBS lol) I have read a few people with similar stories to mine where they had a severe case of GBS (in terms of degree of paralysis, requiring ventilation etc) who have made good recoveries … by the same token there are many many stories of painfully slow recoveries. I think people with Miller Fisher variant seem to get hit the hardest but make good recoveries.

[QUOTE]I have not yet seen a post where someone describes themselves as being where my dad is and come back.
[/QUOTE] Hopefully i can be of some inspiration to you and your dad. I woke up with pins and needles in my hands and double vision, within a couple of hours my voice was affected due to my palate not working. Within 24 hrs i couldnt walk and had to go to my neuro appt by ambulance. he diagnosed GBS and admitted me for IVIG but by the next morning 48 hrs from onset i was in ICU on a vent and in an induced coma. I was paralysed from the head down including my eyes thanks to Miller Fisher. I was in the coma for 5 days. when i first came out i couldnt open my eyes, couldnt talk, couldnt even nod my head. After a few days i could tap my big toe to answer yes or no and that was my only method of communication. I was on the vent for 2 weeks then had a trachy put in so i could be weaned off the vent. I started with 1 hour off the vent, 2 hrs on and gradually built it up to where i was basically breathing humidified air on my own. Then i graduated to room air. Unfortunately my trachy got badly infected so i couldnt have it taken out even after i was breathing on my own. I was eating and talking long before i got the trachy out (3 weeks after it was put in, 5 weeks after onset) In terms of movement, i seemed to regain something everyday, however little. It might not sound much but the day i could put my thumb and forefinger together seemd like a major achievement. By the 2 week mark i could hold a pen and write a few words. I spent 4 weeks in ICU and when i left i could move my arms and legs but still could not sit up or roll by myself. Within 2 days of leaving ICU I was standing with a frame, a day later i was up and walking! I was transfereed back to my local hospital for rehab after 5 1/2 weeks. I had a week of rehab and came home without any aids and needing no further therapy. So i went from comatose to walking in 7 weeks. Admittedly i am a bit younger than your dad but i was by no means in great shape and i have heard of extremely fit people being hit really hard so dont think that is a major factor. I am now 3 months post GBS and i would say i am 95% recovered – my only residual is fatigue. Sorry to ramble but i really wanted to let you know there is hope and yes it is possible to come back from where your dad is/ I wish you and your family all the best.

Hi Erin,

See………………….by all these posts?? Your father WILL get better!!!!
I was 57 when it hit me…..totally healthy, have been all my life (thank GOD), and I ended up in the hospital totally paralysed from the neck down to my toes. And was told that this was going to take quite some time to recover, but that I would…………..I thought…………..OH MY!!!!!!! This can’t be. I can’t do this. But, I did. And now I am about 95-98% recovered. Like everone else, mainly just fatigue, and energy loss.
It takes a lot of patience and resolve. Keep shoving “positive vibes” at your father, and everything will be ok, trust us!!
Best of luck and show these posts (or read them to your father), and I am sure it will help him and his confidence inre to recovery from this. I wish that I had had all this information and support from a board like this when I was down in the hospital bed. I know that I would have felt MUCH better, so take advantage of this documented expertise and get strength from it.

Perry

P.S. Great posts “boardmembers”!!! I am very impressed how everyone jumped in immediately with positive responses for these people. 🙂 🙂

Erin,

There is a thread that I would like you to read (i will post it, if you could just copy and past it to open). Its about a guy called Frank, and his sister posted a great deal what he went through. If you read through Rose’s posts, you will see what Frank went through … 🙁 I have been in close contact with Frank and his family through the months by phone. I am happy to report that Frank should be leaving rehab this weekend. He is still weak, and gets around with a wheelchair. In the beginning, he never felt that he was improving because the little improvements he made were not obvious to him. I have heard his voice become stronger and stronger over the phone, and every time I call, something new has happened. I know he wont mind me saying this, but there was a time he, and I suspect his family, didnt think he would be at the point he is now.

Just a quick note on my GBS story …. I was 18/19 when I got the syndrome. I was paralyzed from head to toe, meaning they even had to tape my eyes closed, so I couldnt even blink at one point. I had a trach for 6 weeks, and had plasmapharesis treatments – with lots of complications. In any case, after lots and lots and lots of physical therapy, both in hospital and later my mom would take me, I was doing extremely well.

Here is the link for you to copy and past to read Franks story …..
I truly hope it helps you and eases your mind a little. There really is hope and light at the end of the tunnel.
[URL=”http://www.gbs-cidp.org/forums/showthread.php?t=99&page=8″]http://www.gbs-cidp.org/forums/showthread.php?t=99&page=8[/URL]

God Bless

erin,

somewhere in the gbs literature it says a fast onset seems to show a quick recovery. but bear in mind gbs time is not normals folk’s time. on the other side of the coin his age & that fact he is a male works against him. given time he will improve. take care. be well.

gene gbs 8-99
in numbers there is strength

Dear Erin,

At this time, there isn’t a doctor in this world that can tell you when, or exactly how well your father will respond to this catastrophic GBS attack. It depends on his will power, his drive to improve, faith, positive attitude, and family support.

When I got GBS I was already on disability with my back. I had degenerative disc disease, osteoarthritis, spondylothesis, back surgery in 1974 that was unsuccessful, chronic adhesive arachnoiditis (a disease of the spinal linings and nerve roots sticking together from scar tissue – caused by the contrast dye used at that time…Pantopaque). I was misdiagnosed, and did not receive IVIG or plasmapheresis.

There is another thread I would like you to read:

[url]http://www.gbs-cidp.org/forums/showthread.php?t=1341[/url] Read all post.

Wishing your father, you and your family the best.

Jethro

Dear Erin,

At this time, there isn’t a doctor in this world that can tell you when, or exactly how well your father will respond to this catastrophic GBS attack. It depends on his will power, his drive to improve, faith, positive attitude, and family support.

When I got GBS I was already on disability with my back. I had degenerative disc disease, osteoarthritis, spondylothesis, back surgery in 1974 that was unsuccessful, chronic adhesive arachnoiditis (a disease of the spinal linings and nerve roots sticking together from scar tissue – caused by the contrast dye used at that time…Pantopaque). I was misdiagnosed, and did not receive IVIG or plasmapheresis.

There is another thread I would like you to read:

[url]http://www.gbs-cidp.org/forums/showthread.php?t=1341[/url] Read all post.

Wishing your father, you and your family the best.

Jethro

Erin,

This site is a wonderful source of information and comfort, I’m glad you found it. I really wish that my parents had this kind of support when they were having to deal with my GBS.

Hi Erin, My husband Bobs GBS onset sounds very much like your dad. Bob was 45(4 1/2 yrs ago)he was on a ventalator for 8 mths and in hospitals for 2 1/2 years. We feel Bob was kind of a miracle(and hopefully your dad will be)because today he is still left in a wheelchair and doesn’t have much use of his hands BUT he does work as a project manager he has no breathing, eating or general health problems.He has very little pain and doesn’t take any pain med’s, alot of people are left with a lot pain but maybe because the onset was so quick it is different. The Dr’s told us the same about the nerves and damage to the nerves. No one would know how bad he was just by looking at him. We go for supper and shows. We visit with friends and family. So I don’t know if this is good or bad news to you but Bob does get alot of enjoyment out of life. He lost alot of things, he loved to play hockey and golf and of course the freedom to get about but I think he would rather be here than not.(There was a time when he thought he would have liked to die but not now)We have 3 daughters and 5 grandaughters who we get alot of support from. Tell your Dad he will be fine and not to believe the Dr’s as they only tell you the worst. They told me (when Bob was in ICU) that I should make plans in case he didn’t get any better, thats when he couldn’t move anything or breath on his own!!I hope this a feel good email and don’t give up!!
Bonnie

Erin,

My fiance Ben had GBS at age 38 (February 2005). Like many of the others on here, his was also a very severe case with a multitude of complications (not to frighten you, but his doctors couldn’t even tell me if he would survive, his case was so severe). His doctors predicted he’d be in a wheelchair for 1-3 years if he did survive; however, he was walking again after two weeks in rehab.

I know it seems like it’s taking forever, but there’s really no way to tell when the nerves will start regenerating. It seems to me that your father is showing signs of improvement though, even if nothing’s showing up on tests.

Just keep hanging in there and being the strong person I can tell you are. I hope it stops snowing there so you can go visit soon!

Love,

Shannon