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How to get treatment when your only positive test is the Tensilon test?

By December 2, 2014 - 7:20pm
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I was diagnosed by a hospital neuro specialist using the Tensilon test. I have since had negative blood work and EMG with the neuro I was referred to. He says that with the other negative tests I can't have MG and it is all in my head. The specialist has argued with the other neuro since I have had to be intubated and have had several hospitalizations due to breathing crisis.
I know that a small percent of MGer's have negative tests but how do we get treatment? I am lucky to have a PCP that is giving me the meds the specialist ordered but I need a neuro.

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