I've posted my history in an earlier post, so that may be helpful if you read this.
I know from what I have read here and in other places, that MG is not easy to diagnose and that it often takes years. So, in a sense, I am getting closer than many people. But, I had an appointment at a MG clinic to get the diagnosis confirmed, and it was cancelled. They have one doctor that dose single fiber EMGs and it may be three more weeks. When I talked to the nurse who scheudlued my appt. last week, and we talked about my symptoms, she suggested I needed to take 60mg without telling me to. At 30mg every 4 hours, I could walk better, but I had very little endurance and I couldn't go to the store without having weakness in my legs. I was short of breath with activity. I called my neurologist and he did not want me to take 60mg because he was concerned I would have a reaction. He said he would not refill the prescription because the diagnosis is not confirmed and Mestinon can cause severe reactions. He said go the ER with shortness of breath. I did that a week ago, and they talked to him and he felt I had anxiety and put me on a low dose of Xanax. I tried it and it didn't help my shortness of breath. So, I took 60mg of Mestinon on on my own and took it every 6 hours because I didn't want to run out. I felt much better until about 4-5 hours after taking it, then my symptoms started coming back. Then I started having shortness of breath in the night, not severe, but I have to sleep sitting up. I was also having it after 5-6 hours after taking my last dose while awake. So I went to another ER. They refilled the Mestinon to get me through about 20-30 days, but said see the specialist. I asked about pulmonary function test, and he thought it would show restrictive breathing when the medication wears off and improvement when it is at its peak. He said there are treatments, like IVIG, but no one would want to do that until they confirm this diagnosis. I asked the nurse at the MG clinic if i could come in anyway, even knowing I may not leave knowing what is going on. She said after reading my history the Dr is not convinced I have this, and it sounds like he will not be until I have the special EMG or positive antibodies. I still need the Musk antibody test. My first acetycholine receptor antibody test was negative. But the lab was having instrument issues and it took 18 days to get back.
I've even started questioning myself...what if this is all in my head? Has anyone else ever felt that way? Is it common that no one wants to believe you have this until it is confirmed? I just worry because of my breathing difficulty.