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Hi, I'm 22 year old medical student and recently I have bumped on one problem.
Few days ago professor on one class just mentioned some disease called Gillian Barre syndrome and connection between this and some other neurological disease.
He didn’t explain to us what kind of disease this really is.
I searched in some medical books informations about this disease but with no success what so ever.
So, if anybody knows more about it- feel free to inform me!

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I know some facts about this disease because recently my close relative was diagnosed with it.
I don’t know much but I know it is very serious and not explored completely disease.
Gillian Barre Syndrome affects the body as if I had a brain stem stroke, paralyzing both sides of human body.
Scientists assume that some virus is trigger for this disease.
After this, one autoimmune process is starting. Main target are nerves and myelin membrane of it.
Good thing about it is that there is cure for it if treatment start early in process. There are some immunoglobulins that can cure this but there are very expensive.
Also, some physical therapy may be involved because it is shown that it can relieve symptoms like paralysis.
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I am very familiar with the syndrome – I have it. I was diagnosed with it at 15 years old. Doctors believe that I received it from a child hood illness Herpes simplex, that disease severely weakened my immune system killing off my white blood cells, which Dr.’s believed caused the Guillain-Barré Syndrome. I was very lucky, with the intense weakening of the immune system they were afraid I was going contract HIV. Instead I live with GBS.
The fluid that is spinal cord and brain contains more protein than usual, so Doctors usually do a spinal tap, that is how they monitor me. Dr.’s do not know much about the syndrome as it is very rare but they do know the immune system begins to attack the body, causing muscle spasms, back pain, temporary paralization. The syndrome comes and goes, I may go months even a year without a sign. The back pain sticks around all the time unfortunately but I have grown to live with it. I know when it is coming on usually by leg spasms I will start to get them slowly then 2-3 times a day, that is when I know to contact my doctor and depending on how everything else is doing determines weather I wait it out or hospitalize me. It gets pretty bad sometimes and is not really treatable, they just can help make you comfortable until it fades – which it always does. Hope this helped.
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I am very sorry to hear that you have to live with such disease. I am a sociology student and I am interested in how you felt and reacted when you were first diagnosed with it. I realize you were just a teenager then. I am also interested in how your friends accepted your disease and how do they (or your new friends) see you now. Are they trying to be helpful or do they just mind their own business? How does the disease affect your whole life? I hope you don’t mind me asking this. If you don’t feel comfortable with talking about it, it is cool.

Thank you anyway!
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I am very sorry to hear that u have guillain-barre, I also have GB. I have had since my senior year in high school, which was 5 years ago. I do struggle time to time with the sickness. I have gotten bad to where I was in bed for 72 hours, because I've gotten so sick. When it all happen I was 18, and the first symptoms was being tired, and not eating. Then I started getting really sick. My paralization started at the legs worked all the way up and then back down. My lungs collapased, and went into code blue several times. I was in the hospital for 8 weeks and was paralized for about 4 months total. Doctors claimed that i would not walk for at least a year, but in less then 6 months i was walking, not walking like i did 2 months before i got sick, but it didn't matter I was happy to be moving on my own. It was tough year,but i ended up graduating a month later after i was released from the hospital. All i saw was tears of joy across the gym. Thanks to the support of my family, and the one above i still here. Having the sickness has brougt alot pain, but at the same time made me relize how really life is imporant. Thanks 8)
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When i was 6 years old, my mom noticed something wrong with my speech. It was starting to slurr a little and she didnt know what was wrong. After a week or two she noticed it wasnt going away so she took my to the doctor and asked what was wrong with me. The doctor said i was fine and its probably just a phase. So she took me to 3 other doctors until one diagnosed me with GBS. They rushed me into the ER and hooked me up to and IV. After a few more weeks i was paralized and it lasted for about 3 months and it it temporarily took away my speech. The doctors took a spinal tap... and at age 6... thats the worst pain you can ever imagine. After many months of therapy i was back to normal and fuctioning like i was before it even occured.

I am still a normal kid and i have no traces of GBS ever anymore.
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i had it too..when i was 12..im recovered about 90%..still have weak legs and dropped feet..i can walk good but cant run..i pretty much can do anything a 45 yr old guy can except run ..other then that it was a slow process recovering ..but it comes back eventually..
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HI, I Had the disease when i was 11 years old. It started one morning when I woke up and I had double vision. My mom noticed I was cross-eyed and took me to the hospital. The doctors didn't know what I had at first but reffered me to a specialist and diagnosed me with GBS. I was in the hospital for about 3 months and had to undergo treatments and therapy. That was the only time I had to deal with the sickness. I am 32 years old now and have not had any problems yet. It is not fun to have it because you do have to go through spinal taps, blood transfusions, surgeries, and therapies for about 6-9 months after you get diagnosed. The doctors said I was very lucky I was not put on a respirator and that my major organs did not shut down. The best thing for this is to catch it in it's very early stages. The funny thing is after I fully recovered, I read in the newspaper that a healthy 30-something male died from the exact same illness that I had. God bless that I am being watched by someone who loves me. The only advice that I can offer is that if you feel that something is wrong with you, GET CHECKED!!!
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i was diagnosed with GBS when i was 10 years old. It started with what Dr's diagnosed as a simple viral infection. During the period of seeing various Dr's, I was prescribed PCN and had a horrible allergic reaction. Over a period of about 1 1/2 years, i went from a vibrant energentic child to wheelchair bound and virtually helpless. It went away almost as fast as it came... I am now 32 years old and just recently even realized that i needed to tell my Dr's about this event in my life. I was always under the impression that it was a one-time illness. I'm glad i came across this post... is this disease genetically transferred to offspring?


God is good.
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Hi, I am a 30 year old female who has had GBS twice. The first occurance was when I was 17 which started with severe headache, vomiting, tingling in hands and legs. I was diagnosed with GBS and treated at my local hospital where I there had treatement through plasmo. In 2003, I woke up one morning with a severe headache and my right eye had totally crossed over and I had blurred vision. I went to the hospital thinking it could've been a mild stroke, especially after being told GBS would not come back. After another spinal tap though, it confirmed that I had Miller Fischer's which is another form of GBS. My question is can this continue to come back and also what are long term side effects from this disease. I feel very uninformed unfortunately even after several dr. visits .
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I was diagnosed with Guillain-Barre Syndrome about 8 or 10 years ago, I just woke up one day and my legs were acting funny, I could walk but my legs had no power, I could even ride a bicycle but as the peddles came to the top I had no power to push them down, very weird feeling, I went for tests and the doctors hooked me up to a machine that sent electrical pulses to my muscles to make them activate, everything was fine, I've had no reoccurance of any kind and you could never tell that I have GBS, I'm not sure if this is related to GBS but around the time I was diagnosed I was told I would have to have B12 shots for the rest of my life, and if I didn't I may be in serious trouble. but just today I saw my current doctor and he wondered why I was still getting B12 shots. I'm 46 years old.
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Hi,
I stumbled across this thread while doing some research on GBS. My girlfriend has been having health problems lately which started last November and resulted in weakness all over her body (no strength to really move). She was hospitalized and they considered GBS, but ruled it out because she still had reflexes. They have done all sorts of scans but neurology said she is normal. She subsequently recovered but recently fell ill again and is now paralyzed from the waste down to her ankles (still posses full sensation). Doctors still have no idea. We are not sure what has caused this but I am wondering if it still could be GBS? Any other theories? As some of you know the diagnosis for this disease can be tricky and hard to obtain. I am looking for a GBS specialist of sort. Does anyone know where I could find one in Ontario, Canada? Please feel free to e-mail me. (_[removed]_)

Thanks
David
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My father was diagnosed with GBS in 1988. It was 9 months after my mother had died from Breast Cancer. His place of employment had been quite unsupportive. His boss stopped him one day and asked him what was more important? His wife or his job? The doctors told him that GBS is a nerve disease that has no known cause and no known cure. It literally eats the sheath off of the nerve and exposes the nerve in the body, acting like a frayed electrical wire. The feeling sensation will disappear due to the lack of communication from the brain to the extremity. My father's symptoms started in his legs. He was losing the ability to move them without using his hands. It got to be bad enough that my father, who never willingly sees a doctor, asked my sister to make an appointment for him. They had no clue as to what was happening. Lucky for my father, the "quack" dr. had an assistant with him that day, who was still in med school. He had just read about it. He told the dr, to refer my father to a nerve specialist. The nerve specialist confirmed the diagnosis and hospitalized my father immediately. By this time he was losing the feelings in his hands as well. The hospital tied him to a bed for 48 hours. He was NOT allowed to move any muscles if he could help it. Then he was sent to Iron Mountain, Michigan, to the VA hospital. There, he said, that he had the best therapists he could possibly have. They read the notes from the Dr in Wausau, WI, and worked with what they could. VA hospitals are not known for their medical breakthroughs, so Dad was fortunate to get this help. He said that the Dr. in Wausau, had told him, by tying him down for 48 hours, it forced the nerves to find alternate routes to send the signals. He explained that it was like electricity in a bad wire, it will find another way to continue moving. My Dad told me how they attached him to a machine that sends electical currents through the body to find a reflex point. This was a way to train the mind and body to look for this feeling so the person could be retrained to funtion agan. He said that the therapist had the machine up all of the way before getting his foot to react where Dad could feel any sort of feeling. The therapist walked away to do something, and Dad had to stop him. The machine had been up too high and it was smoking. The therapist told him that had never happened before, 'course they had never had it up that high before. My father is legaly paralized. The only feelings that he feels without concentrating is the pain of the disease. He was able to reach a functioning point where he is now able to walk and drive a vehicle and an old farm tractor. He is unable to hold down a job because he can not sit long enough to do a sit down job, and he can not stand long enough to do a stand up job. He has a hard time on his back for long periods as well. He said that he has a hard time on the ladder because unless he looks, he has no way of knowing where his feet are. He leans against the side of the ladder as he goes up, to feel where he is and to judge if his leg, and hopefully his foot, are still on the ladder. he is fortunate enough that he has the concentration to be able to do this while talking and doing figures in his head all at the same time. We have heard of other cases of the disease where it conitues to decay and eat the nerves until it kills the heart and or the brain. My dad said that he thinks he was saved because the intern knew to send him to a nerve specialist and the nerve specialist knew to tie him down for 48 hours to make the nerves find an alternate route. I know my spelling is bad, but I hope this helps in your studies.
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TEENATOONS1-

I would love to have your email address. My dad is currently in the ICU here in NC and has been for 22 days... he was diagnosed w/ Guillain-Barre 21 days ago. I'm trying to find people who have gone through this experience, but it is very hard.... it seems like it is even more rare than they say it is.
My email is: _[removed]_. I'd love to hear from you.
Thanks,
Stacey
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Worst flu after a flu shot then heaved my guts out, feet felt like they were in a block of ice the most extreme pain imaginable in my feet and back.The emergency room had no clue either did my doctor.I actually got called a drug seeker by an intern.Because they couldnt figure it out I must be the bad guy.My husband couldnt stand me in pain plus the numbness moved to both hands.After 3 months of this he took me 2 hours away to another doctor wo diagnosed me.I felt better knowing but here I was no one knows what to do with me except treat the pain.I feel useless I stay in bed for days because of pain and weakness.I thank God it didnt move up my body more.People have no clue how devastating this disease is.Show your loved ones u care it does get depressing.My prayers go out to all of you or family members and friends.They need help someone to do housework or cook I would love to have that help.
God Bless You
tina @ godskidalways@yahoo.com
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