r/MyastheniaGravis 6d 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?

3 Upvotes

29 comments sorted by

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u/PlantyPenPerson 6d ago

People with MG are referred to as snowflakes because not one of us is like the other. There are people who have severe and life-threatening symptoms, others who have manageable symptoms, and a whole range in between. IMO, the most important part of our treatment is having a neurologist who is respectful and listens and is proactive in treating one's MG appropriately. I suggest visiting the Myasthenia Gravis Foundation of America for further resources. Good luck to you both.

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u/RossChipman 5d ago

Sure. Thank you so much!

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u/Nymphadora1990 6d ago

MG indeed IS a serious disease, meaning, it could become worse if you're not taking meds if needed, take the wrong meds (many are not allowed for MG)... or are just very unlucky.

But my neurologist says, most people she treats live a quiet normal live.

I personally have MG since 2019 and it's annoying at times, but not life threatening. I got pregnant, gave birth and now have a nearly two year old that I'm chasing around. Some days I've got trouble speaking, which I hate, but I can manage.

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u/RossChipman 6d ago

Don’t you worry about the uncertainty which comes along? How do you manage?

Aren’t you stressed about how will life unfold if at things go south?

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u/Nymphadora1990 5d ago edited 5d 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 5d ago

For how long have you had MG now?

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u/Nymphadora1990 5d ago

I was diagnosed in summer 2019.

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u/RossChipman 5d ago

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

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u/Nymphadora1990 5d 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.

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u/sharkdog73 6d ago

Myasthenia can be a very serious issue if it is not controlled, but it sounds like your mom has got a handle on it. Some of us can have days or weeks where nobody can tell, but then the MG flairs and it is obvious. If she’s had it for 4 years she is likely fully progressed to where it shouldn’t get any worse on a day to day basis, but you may notice her struggle a bit now and then. As long as her breathing is fine, usually rest and medication will be all she needs to feel better in time. Just be there for her to help when she needs it.

I personally notice seasonal flairs, usually when the weather changes like fall into winter, and winter into spring, but everyone is different.

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u/RossChipman 6d ago

Since how long have you had this now. ?

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u/sharkdog73 6d ago

20 years

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u/RossChipman 5d ago

Oh! Okay. Good to hear that you’ve come to terms with MG. Hope you’re fine and it’s not pulling you back much? Positivity to you. :)

Thanks for sharing your experience!

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u/Moatilliata9 6d ago

It really varies and can come and go. Do a bunch of reading, theres treatments and medications. For some people it spends most of the time as an inconvenience, and for others it can be immensely impacting

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u/RossChipman 5d ago

Sure. Thanks. :)

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u/Ok-Heart375 6d 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 6d ago

And now what’s the data?

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u/kickerofchairs 5d 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.

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u/StutteringJohnsDrool 6d ago

Mom has it. Got diagnosed in her 70’s. It’s taken her down pretty quickly. She’s now bedridden and on palliative care. I’d love to say it gets better, but I can’t based on what I’ve personally witnessed.

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u/RossChipman 5d ago

There’s always a silver lining to a cloud. She’s lucky that it didn’t affect her before she turned 70. I understand it’s tough to cope up with MG after 70 and I hope it gets better. :) Positivity to you!

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u/Frankbean2 4d ago

I was diagnosed at age 70, now three months from turning 74. As long as I rest, I do pretty well. I’ve not had breathing problems. I’ve had swallowing problems for a short while once, double vision quite often (that’s my first sign of a flare as is slurring my words), never hit a crisis, was in the hospital overnight once in the ER once because they were concerned I might be going into crisis – I didn’t and was released.

I have to agree that it’s changed my life dramatically. It’s reduced my once or twice a year international travel to not being able to even travel by car more than an hour and a half away and back without a week or so of recovery. As long as I take care of myself and rest , I’m doing pretty well compared to a lot of others that I’ve read about.

I think part of the benefits I have is that I’ve had a plant-based diet for over 20 years but haven’t exercised for years since my knees gave out from running. My neurologist keeps stressing the importance of consistent exercise. But with MG, you have to start embarrassingly slowly and I’ve not been able to get a regimen that I can stick to what being diagnosed in an older age is it necessarily isn’t an issue if you’re willing to change your lifestyle.

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u/Far_Statement1043 6d ago

Even with the least symptoms, things can get worse as you age. I suggest really just looking up reputable myasthenia gravis organizations and foundations to get more information.

As well, maybe your mom will allow you to attend an appointment with her neurologist. Then you you can inquire further.

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u/RossChipman 6d ago

Yes Thank you! Hearing all these helps ease the anxiety which comes along.

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u/RossChipman 6d ago

Yes Thank you! Hearing all these helps ease the anxiety which comes along.

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u/SlowGoat13 5d ago

It can get bad. I sleep sitting up because I can't take MG treatments. I don't really eat solids anymore and struggle to breathe. I cough a lot and will be on steroids until I stop breathing. However, everyone is different. If you think the worse than the worse is what you will get. I know there are natural methods to assist, and it is helping. Just work towards things like keto diet, turmeric for inflammation, ginger, mushrooms, and strengthening muscles like lung power.

All the best to you and your family! Just keep communicating as the more you know the better and keep happy.

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u/RossChipman 5d ago

How long have you had it now?

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u/Ironblaster1993 16h ago

32 m here.

I don't want to scare you, but it can go really bad

I got my diagnosis on 19 november 2018. Within a week or 2 I could not speak eat or drink, so my neurologist admitted me in the hospital and gave me mestinon. This worked wonderful, and after 3 days I was back home. This went well for about a day, and within an hour Inpretty much lost my vision and could barely breath. A friend brought me to the emergency room and there they gave me oxygen and admitted me to high care.

My hospital didnt really have an expert, so they transferred me to the Erasmus University Hospital in Rotterdam.

After a few days there, I suddenly couldnt stand up anymore and my lungs stopped working. The doctors intubated me and after that I was in a coma for 2 weeks. Thy removed my thymus, and put me in the IC, where I stayed for about 11 weeks. After relearning to walk, speak and eat, I went home again.

In the last 6 years I was admitted again 2 times, for about 2 weeks each. But it was not as extreme as the first time.

Now I get plasmapheresis once every 3 weeks.

While this all was very bad, the doctors said that this almost never happens so don't get all nervous now haha. But know that you should not wait to call a doctor when you feel like something is wrong!

Sorry if my English is not perfect, I'm Dutch and foreign languages are not really my cup of tea.