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

@mike1944

Looking for others diagnosed with generalized MG.

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In my earlier post, I described my getting a diagnosis of MG last year. I was hospitalized three times last year. Each time, I received several IVIG. In early February this year, I was very sick with a UTI and upper respiratory problem but not hospitalized.
My meds for MG are IVIG every 4 weeks (just changed to every 3), Mycophenolate 500MG 2 in morning 2 in evening and Prednisone 10MG daily.
I am 81 years old with Type 1 Diabetes, and don’t expect to ever be “perky” ha!
But this past month has been ok. I had 3 weeks with pretty good vision. So, hope springs eternal😊.
I wish you well.

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@janyce

In my earlier post, I described my getting a diagnosis of MG last year. I was hospitalized three times last year. Each time, I received several IVIG. In early February this year, I was very sick with a UTI and upper respiratory problem but not hospitalized.
My meds for MG are IVIG every 4 weeks (just changed to every 3), Mycophenolate 500MG 2 in morning 2 in evening and Prednisone 10MG daily.
I am 81 years old with Type 1 Diabetes, and don’t expect to ever be “perky” ha!
But this past month has been ok. I had 3 weeks with pretty good vision. So, hope springs eternal😊.
I wish you well.

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I wish there was a not heart, as I'm sorry for your ivig story. There was a time when I should have had ivig I think, I was misdiagnosed, having trouble breathing.

My MG complaint this week is that the mg has affected my good eye, I cant see! I go for walks, but I only see the sidewalk ahead of me. But I am breathing and walking!

Thank you for sharing.

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I was diagnosed with generalized MG 4/24/2019 and have been dealing with the challenges ever since. I am currently on 60mg prednisone, 3,000mg Mycofenolate, 60mg Mestinon, and a weekly IVIg infusion. Spent 6 weeks in the hospital when diagnosed and have been hospitalized 3 times since.
I apologize if this is too much information.

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@mike1944

I was diagnosed with generalized MG 4/24/2019 and have been dealing with the challenges ever since. I am currently on 60mg prednisone, 3,000mg Mycofenolate, 60mg Mestinon, and a weekly IVIg infusion. Spent 6 weeks in the hospital when diagnosed and have been hospitalized 3 times since.
I apologize if this is too much information.

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Have you seen that the MGFA has cancelled the annual conference due to covid19?

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@mike1944

I was diagnosed with generalized MG 4/24/2019 and have been dealing with the challenges ever since. I am currently on 60mg prednisone, 3,000mg Mycofenolate, 60mg Mestinon, and a weekly IVIg infusion. Spent 6 weeks in the hospital when diagnosed and have been hospitalized 3 times since.
I apologize if this is too much information.

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I appreciate your info. I wish you well. My Neurologist did tell me the first two years after diagnosis are usually hardest. I paraphrase 😏
I pray your aggressive treatment will soon make a big difference in your symptoms.
I am beginning to notice big improvement a few days after my IVIG that last about 10 days.

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@janyce

I appreciate your info. I wish you well. My Neurologist did tell me the first two years after diagnosis are usually hardest. I paraphrase 😏
I pray your aggressive treatment will soon make a big difference in your symptoms.
I am beginning to notice big improvement a few days after my IVIG that last about 10 days.

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I feel somewhat lucky in that I've never had ivig. Neurologist told me that it's been 5 years since my initial diagnosis, and MG shouldn't be serious for me. I do have other psychiatric problems caused by MG, I went on a 50 mile bike tour with ocular MG (undiagnosed) nearly killed me and left long lasting damage.

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