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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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Woo hoo! I am so surprised. The doctor in Boston did a SFEMG on my face. On the right side, even though I told him my only symptoms were on the left side. This was a different sort of SFEMG--instead of having me tighten the muscles, he sent pulses of electricity to stimulate the nerves.
Well, I have hardly any facial symptoms, just a little pulling in my left eye. So I wasn't thrilled that he was going to test the right side of my face, when the SFEMGs on my legs and arms (where I do have symptoms!) came back only mildly abnormal. But he said the results are clear. Puh-LENT-y of jitter, evidently. He said he has seen 800 MG patients in his career, and not one of them walks like I do. I can't find a YouTube video of anyone with my gait, either. My upper body swings from side to side as I walk. He has never seen that before. I am also sero-negative, and don't have the typical eye symptoms. Nevertheless, he found weakness in my arms and legs, and he said my eyes move in a way that he has only seen among myasthenics. So he is "very comfortable" with a clinical diagnosis of MG. And he is going to recommend Imuran for me. Well, for a seronegative patient with such an atypical presentation, I feel like 14 months between onset and diagnosis is not so bad! And now I have some hope of a successful treatment. I am totally thrilled. I'm going to go throw a party or something. Thanks for all your help and support here. You guys have been just terrific. Abby |
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