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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Hi there, I would love to connect and share experiences with anyone who has Myasthenia Gravis. I was diagnosed 4 years ago and I’m Musk Positive. Thanks

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@kiwigirl4

Hi there, I would love to connect and share experiences with anyone who has Myasthenia Gravis. I was diagnosed 4 years ago and I’m Musk Positive. Thanks

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Hello @kiwigirl4, Welcome to Mayo Clinic Connect. You will notice that we merged your post with an existing discussion with the same name. If you click the VIEW & REPLY button at the bottom of the email notification it will take you to this reply in the discussion where you can meet other members with Myasthenia Gravis and learn what experiences they have shared.

@Erinmfs @mike1944 @gonefishinmt @jlind and others may have some experiences and suggestions to share with you.

@kiwigirl4 are you able to share a little more about your symptoms and if you have found anything that helps?

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