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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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Thanks for replies
Alice - yep I know its stupid preparing for this test like its some sort of exam! And it would actually help if they tested the muscles that are weak, like my hip flexors and shoulder cuffs (sorry dont know what there name is!). They do test around my eye. But they haven't even told me not to take mestinon, its only because Ive had the test before that I know not to take it. Kendra - Ive never had a positive SFEMG or EMG. Luckily the guy Im seeing has done one of the tests before and his was the only test that was painless. If it had been anyone else I would have had serious doubts about putting myself through this again! All my tests have been done in the afternoon. I have only had one Jitter show on a test, which isn't enough to class it as positive, I needed several more. Annie - Im off all steroids will have been off them for 10 months when I have this test. They usually test Orbus Oculi (I think thats what its called) My hand and arm and lower leg. Other than the eye, its none of the muscles that I have weakness in, so as you can imagine its extremely frustrating. I just want to make sure that when I have the test I have nothing in my system that could influence the test. Such as caffine (coffee and cola), Nicotine, Chocolate etc. So that we have the best base line possible. Im going to order some portable oxygen so that I can take that with me. I know what you mean Annie about going off the mestinon for a couple of days. At the moment Im having it every 4 hours, even through the night. Thanks for your help Love Rach |
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