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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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Went to yet another new neurologist, who listened, examined, and shrugged and agreed to let me try mestinon.
IT WORKS. I am doing so much better. Other people can SEE that I stand straighter and move better and don't look so tired and pained all the time. Negative AChR. EMG yesterday didn't show anything either. (Yes, I stopped the mestinon more than 24 hours before the test.) My AChr is negative, and we have begun what is obviously going to be a very long ordeal of getting my insurance to cover the Anti-Musk Ab test (good thing I have an inside contact from my husband's company in the insurance company.) The cpt code that Athena Labs gave me, to tell the insurance, comes up as the test is "investigative" and "research", not diagnostic. Ummmm....what??? So, my insurance contact is going to ask my doctor to put in a precert, ask Athena to clarify, get the test approved, first of all, then we have to verify that Athena is the ONLY source for the test, then get my insurance to approve paying for it, and paying for it as in-network (means I pay $0 out of pocket) versus out-of-network as it is considered (means I pay over $700)....so clearly I'm not getting that test done anytime soon. And then it will probably be negative, anyway.... But the mestinon is working. So, at least I have that, and hopefully the neurologist won't cut me off if all the tests keep coming back negative... Can it still be MG if everything tests negative, but mestinon causes great improvement, or is there something else that acts like MG but doesn't test out as MG? |
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