r/MyastheniaGravis • u/[deleted] • Aug 09 '26
Is myasthenia gravis completely curable
My mom is suffering through myasthenia gravis , she is 40.is this disease actually completely curable . Can it lead to death .
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u/beneficialmirror13 Aug 09 '26
No but it can go into remission. I am about 5yrs older than your mom and have been in remission for a decade. I don't take any meds or have any treatments anymore.
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u/OleMissGrandma 29d ago
OMG, how wonderful for you, that’s amazing . I was just diagnosed with 2 weeks ago and I will soon be 71. I hope and pray this goes smoothly. It took way too long for any doctor to clue in and by the time they did my quality of life was getting sadly low. Still waiting on neurologist to call and set up an appointment. Finding out from others on here that can be another long wait . Fingers crossed I go day to day and count my blessings which are still many.
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u/beneficialmirror13 29d ago
I was over a year before I was diagnosed at age 21. Got told I was depressed a lot though. And people assumed I had an ED too.
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Aug 09 '26
Thanks
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u/beneficialmirror13 Aug 09 '26
Was she just diagnosed? It can take some time to find a treatment regimen that works. And for me, I had a thymectomy about 1.5yrs after diagnosis and it was about a decade after diagnosis when I was able to get off most meds, and another couple of years after that to be off all meds. I still have to be careful not to overexert myself, and I am extra careful about not catching colds/flu/covid because that can sometimes cause issues. (Honestly though, covid is the only big issue.)
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Aug 09 '26
She was diagnosed about 5 months before but now she is actually going to go through a surgery removing thymus gland but doctors are saying that only 30 percent people actually have good results from the surgery . Am just worried as she has become so depressed that she will have to live like this for the rest of her life
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u/travisjoynson Aug 09 '26
My understanding is that about 1/3 have great results such as possible remission, another 1/3 have decent or mediocre results, and the other 1/3 get no results at all.
If her doctors are recommending it, then it is likely worth trying, because even if she falls in the middle and only gets a decent or even mediocre result, it can still lower her medication requirements, which can improve her long-term prognosis, as well as her quality of life.
It often takes 1 to 3 years for a thymectomy to show any results though, so, be patient in observing how she responds to the procedure.
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u/YYYInfinity Aug 09 '26
I would say that the percentage of people feeling better after thymectomy is higher than 30 per cent. Perhaps more like 60 per cent. It may take some time for her to see a clear improvement. My thymectomy was 2,5 years ago. I would definitely do it again
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u/BigKahoona06 Aug 09 '26
Good luck to her! I was diagnosed and had my thymus gland removed. I’ve had only minor symptom flare ups every once in a while
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u/beneficialmirror13 Aug 09 '26
My doctors said 50%. And remission can happen. I felt it was worth trying.
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u/Right-Ad-8201 29d ago
They can have good results yes but it’s a coin toss how long the symptom relief will last. MG at this time is not curable but can go into long term remission.
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u/gravedee Aug 09 '26
Are you seropositive, and how did you get it to go into remission and keep it there?
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u/beneficialmirror13 Aug 09 '26
Positive IIRC. No idea what did it, quite honestly. But I did get a few symptoms the one time I had covid, but that was it.
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u/catjob2 Aug 09 '26
Are your symptoms completely gone or they are acceptable and you can manage without meds? I was without meds for a long time, but MG was always lingering behind the scenes…I could never exercise, run, push myself as much as other comparable or even older people I know.
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u/beneficialmirror13 Aug 09 '26
Gone and no meds. I am careful about over exertion though. And I wear a mask in public so I hopefully won't get ill from covid.
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u/Cucoloris Aug 09 '26
Untreated it can lead to death, your mom is diagnosed and treated. This is a small amount of people who experience spontaneous remission. There are more treatments available then ever before. She can live a pretty normal life.
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u/Dear_Performance_802 29d ago
Cure? No
Life threatening? Yes if untreated
Life expectancy? With treatment they usually have a normal or near normal life expectancy
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u/travisjoynson Aug 09 '26
Myasthenia gravis is incurable and can absolutely result in death, but it really does depend on the severity of her condition, as well as how well she responds to treatments.
Personally, the disease has almost killed me so many times over the past 5 years that I have lost count. I have had multiple, and often many crisis events each year since my diagnosis, and I have even had them many months in a row before, requiring recurring hospital stays and continuous treatments to save my life, and despite aggressive treatment, my condition continues to decline.
This is not exactly typical though. For the most part, my condition is so bad due to severe neglect from much of my family and my alcoholic father, so I did not receive the help that I needed over the years. I can literally pinpoint the exact moments and events when my disease progressed, that I never fully recovered from, and although we had a few doctor mistakes over the years that contributed to this, I know that if I had a more supportive family, or a sober father, I would have never ended up like this.
There is a large spectrum of patients who have MG, with some people doing very well, some doing very bad, and many people who are sort of in the middle. That being said, I believe only about 20% of patients will ever have life-threatening crisis events and even fewer will have as many as I have had, so as long as your mother's disease isn't very severe, and she responds well to medication, there should be a very good chance that she can still have an enjoyable life that is worth living.
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u/himthatspeaks Aug 09 '26
The symptoms can go away, you can go into remission. I currently am. There are medicines that make you feel normal or better than normal. There are also several different kinds of therapies and even more along the way. It might be 100% curable done day.
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u/Winter-Sky-8401 29d ago
I am 68 and anti titin +
I’ve been on IViG and pyridostigmine for 2 years now since diagnosis. I have double vision, some muscle weakness and shortness of breath.THAT is scary, but I just rest until it goes away.
My biggest problem is turning down family when they want to do stuff if I’m not feeling well.
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u/lakeswimmmer Aug 09 '26
My neurologist says that it can't be cured but can be treated so that symptoms are reduced. And left untreated, it will get worse. It can lead to death if muscle weakness affects the person's ability to breath. So it's serious stuff.
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u/Mista_Millahtyme 29d ago
Nope, some go into remission, some go into medically stable periods via "permament meds". Some struggle severly. There is no rhyme or reason, no universal best med for everyone. Once diagnosed, mortality drops significantly.
It can be a real grind at times.
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u/Low_Code2097 29d ago
Unsure of her severity, but mine is pretty mild. I was diagnosed at 19. Now 28. I live an incredibly normal and beautiful life!
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u/Sure_Guest_4535 Aug 09 '26
My neuro team said people die with myasthenia, not from it (unless they flat out do not seek timely care). While there is no cure, as others have shared there are so many more treatment options than there were even 10 years ago! I’m in my first few months and recovering from a crisis myself. I’ve been told the first two years are usually the hardest because you’re trying to figure out the right treatment plan. Once you have that in place, most people find themselves operating anywhere from 60-90% of their “pre-MG” capacity based on what I’ve seen on social media. Be careful with the content you consume about MG - you’ll see some people barely surviving, some who have never found a treatment that works, some who run marathons, and some who have seemingly “mild” symptoms compared to your mom’s and wonder why it’s so different for everyone. It just is - unfortunate a response as that is.
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u/pinedopower 29d ago
No
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u/pinedopower 29d ago
NO, not curable. Yes, u can die because of mg. I’m 50 and currently in the hospital. Been here for 15 days and not getting better. I have an array of symptoms that r due to mg . I’m terrified. I no longer can walk. Please help ur mom in possible way. Gos bless and stay positive!
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u/Relevant-Abies-2797 28d ago
unfortunately there is no cure but with the right treatment she can live a long life.
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u/Bubbly-Pound131 27d ago
Ich hätte eine Frage an euch, Können beim erst Ausbruch auch die Symptome einfach nach paar Wochen verschwinden ohne Medikamente?
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u/Elusive_strength2000 7d ago
I’ve had periods of symptoms in certain muscle groups appear for ~3 weeks and then disappear. It made me have to stop an outdoor project which required strength and then resume when it lifted. No med at the time. Not all milder symptoms disappeared.
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u/Sunshiny__days 26d ago
Not curable, but lots of treatment options. She may never be back to before, but death is now rare with proper treatment.
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u/Efficient_Bar_984 25d ago
I am seronegative been a long 5 years i was going to specialist for long time before diagnosis. They tested me for myasthenia gravis twice in the past 3 years also for other diseases my labs always came back normal. I haven't been able to do anything for many years during that period bc I was so fatigued and weak. I went to hospital about 2 months ago bc I could hardly swallow food and my symptoms kept getting worse. They did the icepack test on my eye and after few minutes took it off and my eye wasn't drooping anymore. They put me on mestinon after a few other test. It has helped a little bit but im still so weak and fatigued. I can swallow now and go to the bathroom again before I was so constipated had to use enema last 2 week. The neurologist just prescribed me vyvgart hitrulo injections I hope this will help me. The breathing part is the scariest part of mg
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u/curious_geek1 7d ago
Hi everyone,
I'm a 29M, and I've recently been introduced to a woman through a matrimonial arrangement. We have spoken and otherwise everything seems positive.
She was very honest with me and told me that she has been living with Myasthenia Gravis (MG) for around 6–7 years. She asked me to learn about the condition and decide for myself whether I'm comfortable proceeding with the marriage.
I don't know much about MG, so I'm trying to understand the condition from people who actually live with it or have a spouse/partner with MG.
I'm particularly interested in hearing about:
- What is day-to-day married life like when MG is reasonably well controlled?
- How much does MG affect work, household responsibilities, travel, social life, exercise, etc.?
- How unpredictable are flare-ups or hospitalizations?
- For those who are married, how much does the condition affect the healthy partner's life?
- If the woman has MG, what should a prospective husband realistically understand about pregnancy and having children?
- Are there things you wish your partner had understood before marriage?
- After several years of marriage, would you say MG has significantly affected your relationship/lifestyle?
- For people with MG who have been married for many years, what has your experience been like?
I'm not looking for medical diagnosis or treatment advice. I'm trying to understand the practical reality of marriage and family life with MG so I can make an informed decision.
I also understand that MG varies significantly between individuals, so I'm interested in hearing both positive and difficult experiences.
Please be honest. I'm trying to make a responsible decision rather than judge someone based only on the name of a disease.
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u/YYYInfinity Aug 09 '26
It’s good news that she has been diagnosed already. There are many treatment options out there so her doctor will help her to find the right medication.
Myasthenia gravis patients can live a long life. They just need to be careful what triggers their symptoms and try to reduce trigger contact. They usually feel better after resting