Myasthenia Gravis*

Posted by socalgal @socalgal, May 10, 2016

Hi everyone, Let me begin by telling you some of my story. In 2008 I was losing my eyesight and I couldn’t make my eyelids open. I had to manually lift them to do anything. I went to a neurologist, after seeing him for a few months, he told my that he believed l had Myesthenia Gravis. So he talked with a collegue and sent me to Salt Lake City to the Univ. Medical School and have a run of tests done by their specialists. He put me on a lot of meds I knew nothing about. At first I was on very high doses of Prednisone and couldn’t stop throwing up so I stopped taking them until I spoke with him. He decided that I should start again but at a lower dose until we found the one my body could tolerate. Well seven years later I am still on Prednisone plus Mesthinon, Cellcept and IVIG once a week now. Only to find out we should have stopped the Prednisone after about 8 months. Anyone with MG who would like to relate their stories, maybe there are things I can relate, too. I would like to know what is going on and what new things are out there. I have been eating much healthier and wanting more freedom to be with my family! Mostly to have a life besides Doctors and treatments! LOL Thanks for the time it took to read this. It’s my first time

Liked by grammlyn

wholly cow, this discussion was awhile ago. I have officially been diagnosed with ocular MG, but I have had trouble breathing, tingling in my left side, swelling of my feet, tingling in my feet. I also had one episode of difficulty swallowing. I had a terrible flare of MG in the fall, but my eyes are improved, no drooping, just some double vision. I came out here to see how many MG folks we had and if there's a discussion going on. thank you for pointing me this direction with this thread.

I may or may not have MG, as one Mayo test was positive and a follow up test was negative. I follow this discussion and have read various items about MG. The neurologist wants to do another EMG, but I'm not sure why. My symptoms are being tired frequently, but nothing ocular, swallowing, or breathing. Hand swelling occurs but no real pain. I just use resistance putty to keep hand strength. I do understand that some people who have MG don't show positive on tests, so we keep looking for what this may be. I'm interested in others experiences with MG. How long did it take to get a diagnosis? What were the progressions, and, of course, how are they coping with meds or other treatments. Thanks to Mayo for this discussion group!

@socalgal Welcome to our caring community I'm sorry you are going through M G Here,s a website may help G

Thank you. I'm still under observation, I suppose, but no real symptoms of MG have appeared. I have an eye doctors appointment next week followed by my neurologists evaluation. My main concern is the depression that has accompanied all these tests and speculation. We'll see what happens.

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