r/MyastheniaGravis

I’m sure there’s a selection bias, and that most people with experiences like this aren’t spending much time on the MG subreddit, but regardless, has anyone just kind of gotten better without medication? Like maybe your MG came on as a flare, and then when the flare went away you were just kind of normal again? I ask because I think my MG was triggered by extreme physical exhaustion over the course of several weeks- basically I did way too much physical labor while not sleeping well and also drinking and eating poorly. I’m wondering if I just prioritize rest for a while and get proper nutrition/sleep if there’s a chance this all just goes away.

MGAthlete on YouTube and Instagram has a med-free remission story, but it takes place over the course of several years, and he hasn’t been active in a while. Anybody else out there had anything similar?

Edit: I’m very aware there’s no “cure”, I’m not interested in the language of cure vs remission, I’m interested in a life that doesn’t “feel” like it has MG. As I said, people like MGathlete, or Daniel Moshe, who did manage to put their MG into remission without meds. I’m just looking for people’s experiences with this sort of thing.

Whats it like to take this the first time? Just a little nervous. Was told to take it before bed at first. 30mg

Afraid to take it before bed, afraid it'll keep me from sleeping

Thankfully, I don’t experience outright swallowing difficulty with my gMG. However, I’ve been suspecting some mild bulbar weakness lately, because I cough excessively after every single meal due to a feeling that food is stuck in my throat. Also, sometimes I feel like swallowing once isn’t enough, and like it’s just harder for food to pass through.

Might be a silly question, but since it’s not “trouble swallowing” outright, I wanted to ask if anyone else experiences this and has to cough a TON to clear their throat after every meal. I’m newly diagnosed and this has never happened to me before, so I assume it has to do with MG, but I just wanted to ask. Thank you in advance for the input!

I have recently had some pretty bad fatigue (sleeping 12+ hours a day) and still needing to lay down in between. I usually feel better even just laying down with my eyes closed for a while. Even when I’m up, it’s hard to stay standing or sitting in a chair without a back but I always feel better laying down. I was a pretty active person, hiking and going to the gym, but that’s gotten a lot harder. Recently doing strength training, I’ve been going down on weights that I used to be able to lift not too long ago and I can barely make it through a set before I have to lower the weight 50+ lbs to even be able to move the bar, I am also way less tolerant to cardio but I also have POTS and pectus excavatum. I’ve noticed that my vision goes double towards the end of the day for a few minutes, which I attributed to being a migraine aura and took OTC meds as soon as it happened so I never got a migraine after like I do with my normal visual auras. I also am finding that I need to swallow a few times for food to go down and that I’m eating fast because it gets harder to eat as time goes on. Looking at some photos and I may have some unilateral ptosis towards the end of the day. I also get very sore in my hands and have difficulty cooking now because of it and it gets harder to prep ingredients than it ever has been. I have an appointment with my PCP in a month and don’t know how to bring this up. The fatigue is definitely my main symptom but hearing about MG I’m wondering if all of this could be related. Any advice is appreciated.

If so, is there anything you’ve learned/done to fix it?

Diagnosed @10 in 2011 I’m currently 25 and the atrophy started at 17-18…….

Already had clean MRI AND CT and tested for other auto immune disorders.
30F. I’ve been dealing with double vision for over three years now. It is always the same direction and the severity varies throughout the day. Most of the time, it isn’t noticeable except in extreme gazes, but since this started, I’ve had probably 5-8 “flares” where the double vision is severe and impedes my daily functioning. At first during these flares, the misalignment in my eyes was not noticeable to anyone just looking at me, but since last year, when a flare happens, it is very noticeable to other people. I look like a mad scientist. During this last flare, I also had a slight dropping eyelid on the same eye that has trouble staying aligned. The confusing part is, these “flares” definitely run with a migraine, or what feels like a migraine, and that’s why no doctor has wanted to test me for OMG. I have been told on numerous occasions that MG never runs with pain. I try to explain I don’t have pain in my daily life. I only have pain with these flares, which very well could be migraines and could just simply be making the symptoms worse. I do have a history of migraines sporadically through my life but I’ve never experienced any type of double vision until the sudden onset 3 years ago. Also, any time I’ve seen a specialist, it’s been on a good day so I
haven’t been presenting with any notable neurological symptoms. Also, this year I’ve had extreme fatigue to the point I could fall asleep multiple times a day if I let myself. I’ve noticed fluctuating ability in the gym and also POTS-like symptoms but it varies from day to day.

My question is- do your symptoms fluctuate daily? Do you have days of very minimal symptoms? And do you have flares where everything is way worse? Does this sound like something I should be investigating?

I'm not sure if this is okay to post this here. She was an amazing doctor and the person responsible for giving me hope for a better life. 🙏😢

I had an RNS done due to having facial weakness, difficulty swallowing, and general fatigue. My decrement was 8.1 on my arms and 8.8 on my face. The RNS specialist said he thinks I have MG with these symptoms and elevated decrement, although the threshold is usually 10. MuSK is negative and AChR was 0.4, which is borderline in that lab.

I am trialing Mestinon (2 x 30 mg) right now, but it doesn't clearly help. Sometimes I was struggling so much with my lunch that I took it, waited 20 minutes, and then I could finish the meal. Other days I feel like it doesn't help my swallowing. With the fatigue, I can feel that Mestinon helps and I have more energy.

How much RNS decrement did you have? Is there anybody who is diagnosed with less than 10 decrement?

It feels like my eyes don't track properly together and sort of flick about and lose where I am on the screen/page. And the blurriness and occasional double vision doesn't help. Does this go away with good treatment?

Hopefully this is the answer i get, started off with fatiguing but weakness is getting worse to the point my muscles are starting to atrophy. I also noticed after doing intense things with my muscles they’d go jelly and extremely weak.

Is getting a diagnosis always such a headache? I have a lot of the classic MG symptoms; leg weakness, Double Vision, Occasional Facial/Neck Muscle weakness. I had a positive AcHR Antibody blood test.

Saw the neurologist today who is saying he doesn't think it's MG based on the fact my 5 minute neuro exam today was normal (aside from the high HR when using my muscles, but that's apparently not his area), dismissed the positive blood test because apparently it's not high enough (0.57nmol/litre) and pointed out I'd also had a negative AcHR Antibody blood test (0.01nmol/litre).

He's ordered some sort of electric muscle fibre test, and some more bloods. Repeated the AcHR Antibody, ordered MuSK tests, and said they don't do LPR4. But the muscle test will be a couple of months. Refused to prescribe Mestinonin on a trial basis because he said he'd need to see clear evidence of MG.

My symptoms aren't consistent, they vary day to day, but I can reliably worsen them with activity. I feel like I'm going to just get dismissed, and left to struggle to walk for the rest of my life. It may not be MG but the suggestion is definitely that if my bloods and muscle fibre test come back negative I'm just going to get discharged from neurology with no answers.

Hello,

I started getting physical symptoms of MG around October 2025 and got diagnosed and have been medicating with mestinon since January. I noticed that I started losing focus faster around April 2025 but wrote it off.

As my symptoms worsens over time, this lack of focus turned to strong brain fog. I'm in the middle of university finals right now and can only find myself looking blankly at my slides. No amount of changing my space or time or diet is helping anymore. The days are ticking by and time crunch can no longer push me to focus. What are some things any of yo have done to change your pace and slip in a 1-3 hours of productivity a day

Something I’ve been noticing for a very long time is that even if I don’t use my legs, becoming fatigued by other activities still causes worsened leg muscle weakness.

For example, today I went to hospital in my wheelchair via an accessible cab, stayed in my chair the whole time, came home and started to rest. However I was very tired by the outing, and still experienced much worsened leg muscle weakness by evening and still am tonight.

I’m awaiting full clinical examinations and testing, but wanted to ask if this was common in others? I’ll be sure to mention it to the neurologist.

Thank you ☺️

Hello
I have three negative antibody mg tests, one weak positive musk with cba, one negative sfemg and one negative rns.
I took one single dose of mestinon 10 mg because I had swallowing issues and wanted to see if will get better, but it all got worse, I got worse throat weakness, neck cramps, sweating, stomach and leg cramps, fatigue …It’s been 20 days since that one single dose of mestinon and the weakness hasn’t gone away. Is it possible to be permanent? I am really scared
Thank you

I'm on Mestinon 60mg about 3-4 times a day. I take it about every 4 hours. I have noticed when I get really stressed or have been standing for too long, I get muscle twitches all over my body. I wrote it off initially but it has gotten worse over the year and I am very confident its the mestinon. I tested going back down to 2x a day, or stretching out the time between doses, but my muscles started failing pretty obviously and I was slurring/face drooped and my arms weren't working. Still waiting on my SFEMG so I doubt insurance will cover anything else yet. My pills are easy to cut in half so I was considering maybe trying half every 2 hours instead? I had increased my dose months ago because of the muscle weakness coming back, so I am torn on how to adjust the dose without getting the twitching. Every time I skip a pill or go past 4 hours the muscle weakness starts hitting again. Anybody else deal with this/have tips?

I will of course be bringing this to my neurologist too, just would like ideas for if anybody else has dealt with this twitching thing:)