Elements & Attributes of my condition

Hello everyone. My name is Robert and I am new to this support group. Let me qualify myself first and say that I have not been told that I have G.B.S. by the military but I know I have this syndrome since I was given the swine flu shot in 1976 when I was in the service. It was not until I had my last episode in the early part of 2014 that I did research then to find out what was wrong with me. We have google now and I google '1976 swine flu shot' that I came across the 'scientific report mandated by congress' to find out why people were dying from this vaccine or started to have seizures or got G.B.S. After reading the report I thought to myself that I could have written it. One of the things that jumped out at me was the world 'episodes.' Every Time I have an episode I have weight loss of thirty to forty pounds.

My 'tingling' did not start at my feet or hands but on the right side of my chest right below the rib-cage and off center of my chest. A few months the little tingling on my chest spread across both sides of my chest, down my arms and down my legs. Within a few seconds I knew right then and there I was going to die. I had several Near Death Experiences N.D.E's by the time I was taken to main army hospital in Nurnberg German. This was in 1976. Since then I do have all the classic symptoms of G.B.S. that include the gastrointestinal symptoms along with breathing problems when I try to sleep on my back etc. I now have a private Dr. and now my primary Dr. at the V.A. seems to be more open on giving me tests that I have been asking for for years like a spinal tap to check the protein level on my lower back etc. Any comments or suggestions are welcome.

Hi Robert. Do your VA benefits allow you to see specialists, specifically neurologists? They are the ones most qualified to deal with GBS. I suggest you research (by internet, phone calls, etc.) the neurologists near you to find any who have actually treated GBS patients. I simply do not trust the doctors who have only read about it, and that seems to be most doctors. We did not get the help we needed until we found someone who had actual experience. In our case, a week's worth of IVIG infusions reversed the process for my son, but it was a long road back. He had lost 90 pounds. He had to learn to eat, walk, write all over again. . . I am still kicking myself for not finding the right doctor until my son was on life support. We could have kept him from getting that bad if we found the right doctor sooner. Hang in there!