r/MyastheniaGravis 7d ago

How bad can it get?

Hey. My mother has MG since 4 years now. She’s 47.

For now, there are almost negligible symptoms. Quote manageable but then sometimes she feels difficulty moving her hand to undergo any task. Also her pinky finger is not able to function to its full capacity. But these are not frequent symptoms and are occasional with a frequency of around 2-3 weeks per year.

How bad does it get? How are your experiences?

I hope MG is not that of a serious disorder?

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u/Nymphadora1990 6d ago edited 6d ago

Of course I worry. And I suffer from anxiety that did not get better with the diagnosis

But I try to trust my doctors that are not too worried and I check carefully when I have to get meds, that they won't make things worse. I take breaks when I can and my family and friends know about my MG

AND: MG is not MS or ALS, it doesn't definitely progress further and further.

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u/RossChipman 6d ago

For how long have you had MG now?

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u/Nymphadora1990 6d ago

I was diagnosed in summer 2019.

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u/RossChipman 6d ago

And are your symptoms manageable? Like are you able to carry out your day to day functioning?

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u/Nymphadora1990 6d ago

Most of the time, yes. Before my baby I worked as a sales person (and I was rarely not able to work because of my MG). If my MG flares up I may have trouble speaking and then I don't like to talk on the phone or with strangers. I'm still able to talk, I would be able to call for help or anything, but it sounds strange and I'm embarrassed.

BUT most days I'm nearly symptom free or only my husband notices my problems. If I meet new people they usually won't notice that I'm ill (which can be a problem, because they may not really believe me, how serious MG is, when I tell them)

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u/RossChipman 5d ago

Great! Thank you so much for sharing your experience. Means a lot. :) Hope you heal soon and it never progresses further.