Did you ever have epstein Barr Virus? There is a connection to most auto immune problems with that too. I had it for 5 months in 4th grade. I am sure all the stuff is connected. ginnie

I was never diagnosed with Mononucleosis. So unless it was a very mild case, I do not think so.

Cait

I had mono when I was 15 years old. I actually almost died from it. I was in the hospital for a week and at home on bed rest for 6 more weeks. My liver and my spleen enlarged tremendously and the doctors feared that my spleen would rupture. I never thought about that it might be related. That has been 40 years ago. I barely remember 40 years ago...........

Ginnie
You said you were healthy for 10 yrs in trial...what happened? When did it end and how Come if you responded so well they didnt keep you on it? I would never have thout you could participate in trial with positive outcome and then they cut you off!

Is there relation between Epstein barre and guillain barre virus?

One of the reasons why I quit the trial is because it was so hard on me. It is a form of chemo, and while the effects of the treatment only lasts about 4 or 5 days, you are kind of in bed with it. It was horrible. I wanted more than anything to try to get on with life. I had started my business and it took off, and my father needed me with his thoat cancer. Then I had my mother to care for as well. I am an only child. I moved from MO. to Fla. and this treatment was not available here. My mom wanted out of the cold chicago area, and I was sick of the whole ordeal. I also had two children to raise. I did the trail from about 1983-1993, and moved down here in 95'.
There were never any guarantees with the trails. I did it for research, for those that follow, including my own children, as there is a genetic component. My son, had the epstein Barr Virus badly too, and as a young man in his mid 30's he had thyroid cancer. I guess the more they learn about auto immune problems, the better it will go down the line. Monal clonal antibiodies, which they take your antibiodies out of the spinal fluid, inject them into mice, let them produce the proper antibiodies, and re-inject back into you, is what they were doing "after me." The diseases like cancers of the blood, were going to be done first, and the diseases, that kill are on the top of the list. My stuff only makes you sick, but not lethal so to speak. The DNCB which is a word about 30 letters long, I can dig up in my records. I never could pronounce the word. The trial was without cost to me, but working was hard to do while ill. I had no health insurance because of this trail and pre existing conditions. Set me up for failure financillly. Had to work and get on with life. It is a huge committment, to do all your life. ginnie

I would not doubt that Epstein and Gullain are in some way connected. I did a tremendous amount of research while at University Medical Center. I had access to the student doctors library. I kept up with the research for a long time, to try and figure out for myself, what was up with me. It helped me to cope being involved and not passive. ginnie

Although I was only recently diagnosed with generalized MG, the symptoms started following a bout of the H1N1 during the fall of '09. My doctor feels that is what started it.

Here's my story. I did not have a flu but a cold that held on for a month and a half and was over everything but a nagging cough. When I went in t0 he doc in a box my oxygen level was at near pneumonia level so I was giving antibiotics and a flu shot. 2 weeks later I developed a droopy eye and MG was diagnosed 2 weeks after that.

I was hospitalized with a serious viral infection in 2005. I had mostly neurological symptoms and was diagnosed with vestibular neuronitis with encephalopathy. I was having debilitating dizziness and vomiting. I also lost some hearing. I had many tests to determine the viral cause but nothing was found. At that time, it was noted that I had ptosis and leg weakness. I went home using a walker and had to relearn balance.
My current Neuro is sure that I was manifesting MG symptoms at that time but it was overlooked. He also thinks I had signs of MG before the virus but the stress of the virus really brought it out. He thinks I was put in remission by the massive doses of IV steroids I received (10,000 MG a day for 5 days) Many years before, I had reacted badly to local anesthetic several times. When I could not move or lift my head after a procedure everyone thought I was crazy.
I think the MG was there before my virus but was brought out by stress and fatigue of the hospitalization
Sandy

I had the flu which did put me in the hospital. Shortly after that, I received my first auto immune problem. Have no doubt that the flu and meds. given and considering how sick I was, contributed to auto immune conditions. ginnie