funjohnny
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Debbie is correct. I started at that amount now down to 500mg 2times a day. My Neurologist is going to probably cut it down to 500mg 1 time a day next visit in a couple of months. I take 60mg Mestinon 3 or 4 times a day. I am 78. Very active, play Pickleball with much younger players and ride my bike the days I don’t play Pickleball.
Once before I went off all medication and after a few months my symptoms returned so went back on full doses and now trying to wean off again. Luckily I am a veteran and get my meds from the VA.
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I was eating dinner at my sister in law’s house September 2013, all of a sudden I started to slur my words. I couldn’t pronounce the “th” sound. It was weird. Started to have a swallowing issue also. We were visiting family in NY at the time. Came back home to Austin, and still was having these issues. Went to ER, they took tests and the ER doctor said, “it isn’t ALS” which I guess was to make me feel better. I was getting nervous about what was going on. I was an avid cyclist at the time and one of my riding buddies was an ER Doctor who lived near me. I told him what was going on, he had me come to his house and sat down with me, asked questions, did an examination and within an hour said to me, “ I am sure you have MG”. Never heard of it before. But with his diagnosis I felt better, made an appointment with a Neurologist and was put on Prednisone. Found another Neurologist who agreed with me to not stay on prednisone and switched to Cellcept and Mestinon. Since I was able to continue to do everything I was already doing, except slurring my words and difficulty in swallowing. She also encouraged me to have a Thymectomy, even though most doctors at the time were not keen on surgery for a patient over 65. I was 66.
I am now 77 and thankfully still able to do everything I was able to do before MG. Sometimes in the hot Texas summer I slow down a little faster than others who do not have MG. I am now an avid Pickleball player competing with people many years younger than I.
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Pernicious Anemia….diagnosed around 2000