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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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At Mayo they used a different test to confirm my MG. They sent me to the eye doc there who had me match spots with laser pointer and special glasses. Then they injected a small amount of tessilon and redid the test.
I don't know if they can do the same test for you locally or if its their own test, but it would avoid the single fiber and is probably more acurate anyway. Also, don't panic. It'll only make your symptoms worse. I wasn't real happy with the SPS testing the did, though. She admitted to me that now that I'm on treatment for it, it'll be impossible to real diagnose, though. So I guess I was warned. Their blood testing came back high but not off the chart (probably because of the immunosuppressants), and the single fiber tests came back negative (probably because of the valium). Even though their own criteria says that a positive blood test is positive, whether its borderline or off the chart, and that there are sero negative SPS patients, she said that she had to call it probable well controlled SPS. To my mind, there's nothing probable, and well controlled is debatable since my neuro wants me to keep cutting down on Valium (was at 45mg, I think she wants me closer to 30mg), but I'm feeling sore and stiff so I'm edging my way back to 60mg (where my cardiologist wants me). I'll need to convince my neuro I'm on the proper dose, though, since she's writing the scripts. The last script was for 70mg, but she said I should be cutting it down ![]() Last edited by BackwardPawn; 12-27-2013 at 12:05 PM. |
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