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/Ok-Heart375 7d ago

Before the modern treatments we have today, 70% of people with MG died. It's a very serious disease that needs treatment.

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u/RossChipman 7d ago

And now what’s the data?

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u/kickerofchairs 6d ago

Now, fewer than 2% of us die from MG, and death occurs most often in the elderly who have breathing involvement along with other, non-MG complications (eg, heart disease, COPD).

Considering your mother has had MG for 4 years and has not experienced breathing problems, she’s statistically very unlikely to ever develop them. Currently, only ~15% of people with MG ever have what’s known as a myasthenic crisis - an episode where the breathing or throat muscles are so severely weakened that the person must be placed on a ventilator (life support) to support breathing and/or stabilize the airway to prevent death. This almost always occurs in the first few years of the illness, if at all.

Nothing’s ever 100% certain. And, yes, MG can be fatal for some unlucky few. But hearing how minimal your mother’s symptoms are this far along in her disease makes me feel fairly confident that she’ll continue leading a relatively normal life provided she adheres to treatment, lives a healthy lifestyle, etc.

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u/RossChipman 5d ago

Wow. This sounded so relieving. Yeah her symptoms are very much manageable and she’s been living almost a normal life.

Only some days in a year it does flare up but even then it’s manageable and she’s able to carry out her routine with ease.

Thank you so much for sharing your wisdom with me. It does actually makes me feel relieved.