Ginnie-
Thank you for your response.
I am back home in Illinois now...have a more clear direction now. The Neuro there never stated that I was Neg. for MG...but she did state that SOME people test positive and might have LEMS (Lambert-Eaton Myasthenia Syndrome - I think) and not MG. However, after meeting with her again, after my tests results were done and in her possession, she is confident it is MG. She did say that she feels the MG is mild...which, because I suffer, I sorta disagree, but I know that it could be a lot worse. I am hopeful that medicine and maybe surgery down the road a bit will be helpful. Thank you again for the support!!!
Quote:
Originally Posted by ginnie
I bet you are confused. However, Mayo does have one of the best diagostic centers in the country. Do you have all records and tests presented to them from Chicago? You need to ask the doctors there, how they can say you are negative, with those numbers. I am not sure what LEMS is. Don't hesitiate to grill them on any issue you have. Keep a journal while you are going through the tests with all your quesitons. If you are not getting the answers you need to feel good about it, insist while you are there that they explain their positions clearly. I went there in 1980. Yes, several days of testing, but by the time I left, I knew exactly what was wrong, and was sent in the right direction for treatment. Hang in there. Repeting tests, is something I hope you do not have to experience. Most of the doctors I saw there were fantastic and did explain things to me very clearly. Also ask for the latest research, studies and trials that are going on once you get some defininative answers. They have access to all the latest research. You have to ask for that, but they will tell you. I wish you all the best. Let me know how you do. ginnie  |