rapid onset rapid recovery?

October 31, 2006 at 5:05 am

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.