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Myasthenia Gravis: Share your treatment journey

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.

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Pippa | @pmci | Sep 7, 2022
In reply to @lucylulu5280 "Hi @pmci - I'd be interested in hearing what you and @ellen307 's think helped stop..." + (show)
@lucylulu5280

Hi @pmci - I'd be interested in hearing what you and @ellen307 's think helped stop your symptoms. I was diagnosed in April 2022 with MUSK MG. At the time, my symptoms were only double vision and drooping eyelids. I thought I was having a stroke, so I went to the ER. During that visit on a Wednesday, I was also diagnosed hypertensive (for reference, I'm 54 and about 15 pounds over weight). On Friday, I started taking medication for my BP, eliminated all caffeine, gluten, animal products, and sugar from my diet. By Monday, my symptoms were gone and have not returned. I have never taken any medications for my MUSK MG. For now, my neurologist wants to see me every six months or if/when my symptoms return. I won't have antibody bloodwork again until Feb. 2023. While my diet may seem extreme (vegan/gluten free/sugar free/caffeine free), it's really not impossible - I can even eat in most restaurants! And worth the trade-off to not have MG symptoms. So just curious to know if you or anyone else here believes diet played a role in living symptom free.

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Hello. When I was very sick with MG, decades ago, I recall that a heavy meal seemed to exacerbate my symptoms. However I’ve never noticed any other link between diet and MG, and have never heard anyone else make that link (but MG is such an under-researched condition that there could be an unknown link). The disappearance of my symptoms wasn’t a result of a change in my diet anyway. (No meat except in recent years chicken and fish, otherwise I eat anything). Good luck!

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Pippa | @pmci | Sep 7, 2022
In reply to @pmci "Hello. When I was very sick with MG, decades ago, I recall that a heavy meal..." + (show)
@pmci

Hello. When I was very sick with MG, decades ago, I recall that a heavy meal seemed to exacerbate my symptoms. However I’ve never noticed any other link between diet and MG, and have never heard anyone else make that link (but MG is such an under-researched condition that there could be an unknown link). The disappearance of my symptoms wasn’t a result of a change in my diet anyway. (No meat except in recent years chicken and fish, otherwise I eat anything). Good luck!

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And to answer your question, I’m mystified by the disappearance of my symptoms after having been so sick for decades. So I’m sorry, I can’t help you there.

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carrie13 | @carrie13 | Oct 21, 2022

I can’t seem to be able to post a discussion, so I will try this…Has anyone with Myasthenia Gravis had COVID and been treated with Paxlovid? Any results, problems?
Thank you!

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