Oh Anna Bull, thank you for your post! I needed to hear this tonight. I am on 60mg pyridostigmine 4 x day and was just prescribed 10mg of Prednisone. I am staying firm that I will not spend more money and time on a test that does not even seem to be necessary. Thank you again for your response just now.

I have never heard of that, probably because my ACHR was so out of range that it was obvious I had MG.

Dear Marie, thank you for your honesty and transparency. That had to be so hard for you to write such personal things to this community. MG is a very misunderstood disease and sometimes takes years to get a diagnosis. Many doctors just are not knowledgeable with MG. I hope you are doing well today. Thank you from the bottom of my heart for sharing your story. Please take good care of yourself.💞

No. Blood test and symptoms

I had three EMG tests to verify I had MG. I also had the single strand done in Miami. I have had many trials with meds and try this and try that. I was on plasmapheresis and even had two fistula but both ended up failing. I did well on it but my veins vetoed the process. Still on mestinon and it is not as effective as it once was but the only regime my body uses. I was on large doses of prednisone after my thymus removal by open chest surgery. The procedure is simplified now. 110 mg on even 100mg on odd. Gained over 100 pounds when they decided too much. I had the necklace around my throat that scared one doctor so then I had to be weaned off of that. Also had imuran, and I do not even remember all the things that were tried. I am leery of the new stuff because of all the reactions I have to everything. Even got into a heated discussion with a neurologist who told me if I ended up in his hospital I would have IVG. I told him then I guess I would not be going to his hospital. The newer treatments warn of headaches, and I had migraine headaches before I was diagnosed with MG. so will not consider anything that will mess with my head again. I also have copd and so the lung warnings also are a flag to me. I was 32 when I had thymectomy and am 79 now. Recently a doc told me they should write a book on me because most are dead with all these things. I told him he needed to shut up! Sorry for running on and it does not even have all the trials and tribulations, but it is the first time I have even shared this in such a public way. I love life and my beliefs have carried me thru so many things.