Hi everyone! this is Scott [survivor 48] from years ago! miller fisher variant recoverer since august 2001! all of you can read my story @ [url]www.aboutgbs.com[/url] page #2 known as survivor 48. educational and funny at times but most of all actual reports from my brother and my doctor’s!:D
hope to talk to all of you soon!
[FONT=”Arial Black”][SIZE=”3″][/SIZE][/FONT] i am an old miller fisher gbs’er from 2001 ,,i wrote my story to help others , but could not print it here so it is on a site called [url]www.aboutgbs.com[/url] known as survivor48 story #2 on left hand side a little way down . it’s long but people have told me it’s interesting!:) i hope all of you are feeling as well as possible and anyone wants to get ahold of me you sure can! i maybe able to download it here,,i’ll try
My cidp began with numbness in my hands, bothersome
but I could live with it . Finally saw doctor and got splints for what I thought
was carpal tunnel disorder. Of course they did not work .Time went on and I
began to experience numbness in my feet. Wentto thedoc again got a1c blood test for diabetes, because Iknew about diabetic neuropathy. Next came
the drop foot and several falls,luckily Iwasnt seriously hurt. With the help of
some wonderful people Igot to a very experienced neurolgist.LUmber puncture
and nerve cuductionspeed testEMG.Diagnosis cidp; cure IVIG;so far so good.
I do have some residuals how ever. Hope this helps
I had a severe case – Miller Fisher variant.
How long did it take for you to become severe? –Woke up on a Tuesday morning not being able to get my eyes to focus. By evening was distinctly seeing double, my sense of balance was off and had to hold on to the wall to walk. Woke up the next morning unable to open my eyes – absolutely no balance – went to eye dr first who referred me to ER, was admitted – no longer able to walk or raise my right arm, speech severely slurred. Diagnosed with GBS on Friday and admitted to neuro-ICU. Completely paralyzed (except for being able to wiggle toes) and on respirator by that Sunday.
How did doctors Dx you? Many tests, but in the end it was a spinal tap.
How long did it take for a Dx? I was lucky – two days.
What was the treatment? First plasma fleuresis, then a month into my being completely paralyzed they gave me a round of IvIG.
Did any of you have to self treat because of lack of medical help (assuming mild cases since severe cases end up in the hospital) and how long did you have to do this before receiving medical care? N/A
How long did it take for you to start getting better? I was taken off the vent after two months, and things started coming back quickly after that. I was in the ICU for a few days before being switched to a regular room. Then, a week later was transferred to rehab hospital (even though I still couldn’t swallow and was being fed through peg tube). After three weeks in rehab I recovered to being able to swallow, move arms and legs, open/close eyes at will, and walk while holdiong onto something. I was discharged just after three weeks. I continued out patient rehab for another year.
And how long has it been since you were first diagnosed? This Oct 5 will mark 13 years. I consider myself to be fully recovered. Only lasting sympoms I have are: numb hands, no reflexes, eyes droop sometimes when I get too tired, and my energy level never was what it was before. But, none of these interfere with my everyday life.
Biggest question, because a lot of this will differ between people….What were your first symptoms and what do you feel started it? Already answered my first symptoms, but my trigger was a mild case of the stomache flu I had a week before onset.
Well it all started when i was four. Playing around with my neighbours in their yard and suddenly this excrutiating pain in my legs then arms, and finally paralysed. Was so scared, then my parents took me to the docs first thing next morning.
Was admitted to hospital, and doctor was quick to diagnose it as gullain barre syndrome. He advised my parents and told them home physio was the only option to get back on track. ( plasmophoresis wasnt available at that stage in 1989) . Was in a wheelchair for like a yr.
Anyway my parents never told me exactly wat it was. Infact they just kept mentioning it but due to their lack of english didnt sound right.
It was just recently i knew what it was due to my pharmacy studies at university. i shrugged it off because i was too busy studying at that stage.
Anyway, finally my mother told me to get accupuncture to see if that would help. It didn’t. So then i was referred to a neurologist, and after a ct scan and mri done on my head he told me that in his medical opinion that infact i dont have gbs but rather cerebellar atrophy ( rather shrunk cerebellum due to inflammation). And he said that was what happened when i was four years old.
I am 21 years old, and that was the first time in ages i cried. I was so scared because i was hoping for a brighter future, previous doc said itd get better, got my career on track, having good social life also. But then after hearing the bad news and other things i have developed chronic insomnia. Doesnt seem i sleep at all, just nap all night and look like crap in the morning, Its been 5 months. Anyway i have defferred uni at the time, and i hope things get better , And yes i have tried everything, accuppuncture for sleep, natural physical therapy, psychologist, counsellors.
I am waiting for this package in the mail as my last resort.
All this time with the symptoms i have i wonder why me nor my family nor the hospital doc didnt pick it up over the 17 years its been. My symptoms are hand tremors, lack of balance, clumbsiness. If i had known earlier life would have been different thats all i can say. Like i read about all these kids knowing that they have my condition at a very young age, just couldn’t happen in my case =(
Hope u guys are sure that u positively know the exact medical condition u have, thats all i can say.
I think thats all for now,
I was diagnosed with GBS last summer (I was 20). For me, it happened pretty gradually, but not too slowly. The first thing I noticed was my legs beginning to get weak and it was hard for me to go up the stairs in my house. Then I began not only to be weak in the legs but also walked funny. Nothing ever really happened to my arms other than they would tingle a little bit. I was also pretty sick at the time so I thought that I was just weak from having some kind of virus so I just kind of pushed it off. Then about a week later I went to my family doctor’s office, but he didn’t really know what was wrong and just gave me the run around and sent me home and so did the ER. Another week went by and my face began to function weird. When I talked some words were hard to get out right and I couldn’t smile properly. Then the next day I went to eat some cereal and the milk just fell right out of my mouth because I couldn’t control the muscles in my mouth at all. That day was probably the fastest progression day as far as the whole situation. Halfway through the day I could already not shut my eyes, life my eyebrows, or even talk right at all. I couldn’t chew up food or anything. It was aweful. So the next morning I went back to the ER and my mom told them they were not going to send me back home until they figured out what was wrong with me. I couldn’t even walk on my own, and even with help I didn’t do so well. Now that I look back I understand that it’s not a disorder that is seen often nor is it known about to most people, so that is why it was just looked over. I spent that night in the hospital, still not knowing what I had wrong. By that time several doctors had already came to see me and examined me and still no answer. Then they called in Dr. Goldfarb, a neurologist, to come see me and the first thing he said that I had after just checking me for 5 minutes was GBS. Just to make sure he did a lumbare puncture (spinal tap) on me and sure enough he was right. I was so scared because he told me that I could possibly be in the hospital for a long time. I ended up getting the IV treatments for 5 nights and was in the hospital for one week. When I was released, I still couldn’t walk without assistance, but I was way better than when I went in. It took me about 3 months to totally feel like myself again. Now it has been over a year since I was diagnosed with GBS and I still don’t have much flexibility in my legs and sometimes I will get tingles in my arms and legs but other than that, I’m fine!