damn gbs ruined my life
AnonymousSeptember 7, 2006 at 1:17 pm
Welcome. So, you are really saying, GBS didn’t wreak anything in your life, what was finally confirmed did, all that time. I’d direct things more to doctors mayby, then a disease you never had.:) As swimm said, we can help in many ways, and you don’t have to have GBS. Along with him, I welcome you to get to know us and see if we can in some way.
AnonymousSeptember 8, 2006 at 11:57 pm
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,
AnonymousSeptember 9, 2006 at 7:45 am
hi yellowboi & welcome,
when you say your mom told you to go for accupuncture, was it for the insomnia? if not, would you pls let us know what symptoms you have besides the insomnia? what is the prognosis for your cerebellar atrophy? can we assume the inflamation is gone & no further atrophying will take place? since your insomnia seems to have started when you were informed of what’s really wrong w you, assuming the doc is even right, it sounds like you might be depressed. perhaps, zoloft. you mention a lot of things you have tried for your insomnia, but not medication. have you also been down that route? we are only lay people, but there is one MD who reads & posts to tis site. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousSeptember 10, 2006 at 12:24 am
Sorry to hear of your illness. Life isnt fair but we have to learn to rise above it. Youre 21 and you have a lot of life ahead of you. Study all you can about your illness. It sounds like you may be in some medical field. Maybe you are called to do something with this illness to help others like yourself. It is OK to be angry. It’s part of grieving. You are grieving now for what you have lost. If you can’t sleep, see if you can get some help for that or for your depression. Welcome to our site. We are all struggling with our illnesses here but have learned to rise above them. If we dwell on what we can’t do or have, we will miss out on what we can do or have. You are no longer paralyzed so praise God for that.
AnonymousSeptember 10, 2006 at 7:27 pm
There are many neurological diseases similar to GBS that may cause paralysis, such as Transverse Myelitis. TM is a rare neurological disorder that is part of a spectrum of neuroimmunologic diseases of the central nervous system that include: Acute Disseminated Encephalomyelitis, Optic Neuritis, and Neuromyelitis Optica. However, I would not rule out GBS with your symptoms and the acute onset. A 2nd opinion is advisable – you need one for peace of mind…your current dx may indicate a tumor from what I read.
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