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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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02-16-2013, 01:24 PM | #71 | |||
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02-16-2013, 06:11 PM | #72 | ||
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Sorry, I hadn't understood that they had not done their own tests.
Was your neurologist, for whatever reason, inexperienced as to how they would proceed on a patient without tests? (Or maye just too normative like some of the people on here, he was dreaming about what they should be doing ) Some patients need to be protected. He shouldn't have allowed you to set foot in there. Nobody is primed for the kind of treatment where even doing exactly the right thing by the most perfect standard can leave you stranded. It's clear that doctors would punish patients with conversion disorder, whoever they are and however few they may be. I've got to ask then, why not immunosuppression, Mestinon, and CPAP or bipap for everyone so that some of the rest of us -- who have never done anything bad to speak of -- can spend those precious years of our lives actually breathing and not paying for others' sins? |
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02-16-2013, 06:52 PM | #73 | |||
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My local neurologist thought he was doing the right thing by sending me out. He had not gotten a diagnosis yet and was afraid for my life and was not too proud to say that he was in over his head. He had done his homework by doing the Lems test, even though it did not come back right away. He had no idea that I would be treated as I was or he would have never sent me there. He apologized to me profusely for what happened.
He had me on prednisone and as much mestinon as he thought was safe and the Emory team did not think I should be on any of it. To my knowledge, the folks at Emory did not perform a LEMS test, but if they did, it should be coming back to them by now. |
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"Thanks for this!" says: | Anacrusis (02-17-2013) |
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