I have been getting more and more fatigued slowly over the last 8 years. I have cut down work with kids/physical therapy in order to cope. My symptoms include visual disturbances, but not full double vision, sort of pre-double vision, things don't like right, and exhausting to get through the day, vision wise. My breathing often feels like it is difficult, less deep, for some reason especially early in the day. I often feel at those times like it is to much to talk, and I tend to keep quiet. My voice changes, especially towards the night, and people often ask me if I have an accent. It gets more difficult to talk with good coordination, but it is not obvious to other people. I went to a doctor who gave me various tests including for Myestinia Gravis, all of which were negative. He offered to give me Mestinon, since he thought it was possible that I have MG. Within three days, I felt better than I have felt in 10 years. I was breathing more deeply, and my vision was clear. I had much more energy, was able to talk, and participate in life much better. The first Doctor specializes in genetic muscle problems, so he wanted me to go to an MG expert. I went to one, who was very angry, and told me that it is absolutely impossible that I have MG, and that it is all in my head. He said that I should stop taking the medicine, as it is poison, and that I should do exercise and improve my attitude. I decided to give him the benefit of the doubt, and hoped that I had imagined the whole thing. I stopped the medicine on a Thursday, and by Saturday, the symptoms including disturbed vision, exhaustion, decreased depth of breathing, not having enough energy/depth of breathing to socially engage in converstion especially early in the day returned. Now what can I do. If I have MG, which I believe that I do, I would like to take the Mestinon. But, I need to find a doctor who listens to the patient. I don't want to take a medicine without being monitored by a doctor. Does anyone have any opinons or advice. Do you think it sounds like I have MG. Do you have any idea about how I can find an open minded and smart doctor who understands MG in NYC. Thanks a lot.
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