Miller Fisher variant

October 4, 2006 at 1:31 am

I got GBS / Miller Fisher variant in July 06. I too deteriorated rapidly. I woke up with double vision and tingling in my hands and then my voice went funny. I too thought i was having a stoke and went to the local ER. I had a referral to a neurologist in another town the next day but by the morning was unable to walk and had to go by ambulance. the neurologist diagnosed GBS immediately. I had a spinal tap to confirm it but the results didnt come back for a week and by then i had been in a coma for 5 days, ventilated and had 5 days of ivig … i’m glad they didnt wait for confirmation as i was totally paralysed within 48 hrs of onset.

I spent 4 weeks in ICU (first 2 weeks on a ventilator)and another 10 days on the medical ward while i waited to get my trachy out due to a infection. A couple of days after leaving ICU i was able to stand and walk with a frame. By the time i left that hospital i could take a few steps unaided. I then got transferred back to my local hospital for physio and OT. I spent another 10 days there by which time i could walk pretty well unaided and was able to do the physios obstacle course. I spent 7 weeks in hospital altogether and walked out under my own steam and without any further therapy required.

When i left hospital I still had double vision and some drooping on the right side of my face but barely noticable. I was expecting the double vision to take months to come right but a week later it miraculously came good and i was able to drive again. It is now about 10 weeks since i was struck down so sudddenly and to look at me you would have no idea that i was in a coma on life support and totally paralysed (apart from my trachy scar which is a beauty!) The only ongoing problem i have is fatigue. I have to have a “nana nap” most days and at night i get aa dull ache in my feet but nothing so bad that would require medication.

Hope this helps … please feel free to message me if you want to chat.