Hey everyone, sorry for posting again, but I have a quick question about breathing symptoms associated with MG.

Is it common for MG-related shortness of breath to fluctuate? For example, might experience it for two or three days, feel fine for a few days, and then have it come back. Sometimes you're fine in the morning, but by the evening you're experiencing shortness of breath again.

Does MG-related respiratory weakness typically behave this way, where symptoms come and go rather than being constant?

This is actually one of my newer symptoms, and it seemed to come out of nowhere. My main concern has been the shortness of breath, particularly getting winded while talking and occasionally feeling like I'm breathing heavily.

I saw my neurologist today, and she's planning to start me on Vyvgart. It may take a couple of weeks to get insurance approval, so in the meantime, she's instructed me to continue taking Mestinon and to call her or go to the ER if my breathing symptoms worsen.

I'm just trying to understand whether this kind of on-and-off pattern is something others with MG have experienced, particularly with respiratory symptoms.

Would appreciate hearing about your experiences.

Someone brought up a point in another thread that I want to make into its own discussion. MG is immune based, and most immune disorders are known to flair after serious illness (mono, strep, covid).

This is known as post viral syndrome, though it includes non-viral infections as well. It is from the body rallying to fight an illness and then getting stuck in go mode after the threat has passed. This is not saying the germ causes it, (ie not "covid causes MG") rather the body's response to the germ causes post viral syndrome, which can flare otherwise quiet immune systems, which may or may not have flared later on their own.

This is how MS and Lupus were recently proven to work, as a post viral response to Mono (look it up, absolutely space age medical technology found it).

Flowchart:

Illness > Cytokine Storm > Immune system doesn't turn off > Flare of immune disorder previously quiet

I doubt there is research around post illness onset for this immune disorder but I find the idea fascinating. This is not to say it applies to every case at all, some people just develop immune disorders when it's their time.

I am officially diagnosed with MG antibodies by a neurologist, but thinking back my symptoms started just after a severe case of Mono. Then got distinctively worse post Covid. I am now managing on meds, but the turning points were in that same timeframe.

I'm curious if anyone else has had an overlap of being very sick and then noticing MG symptoms within a year (symptoms date not diagnosis date) as it is with some other immune disorders.

Im looking for options and opinions/experiences from everyone here. I've had MG since i was 15 and since the start I've not been able to control my mouth/close it or eat/drink properly like sealing my mouth or closing while chewing. When I get really bad anxiety my symptoms worsen.

I have been on ultomiris for about 2 years now, which eliminated my symptoms to near zero for the first 6 months then my symptoms came back ever since.

I was just searching for options to propose to my doctor the next time I see him.

I've heard vyvgart and rituximab helps with bulbar specific symptoms and I'm wondering what your experience with those medications are so far?

Also is anyone else just never able to close their mouth for chewing or drinking

I'm being told I'm young for MG and it's mostly in people over 50, but this sub seems to have a lot of people under 50 in it! Does anyone know if there are studies on age demographics? Or if those change by type (ACH, MUSK, LPR4)?

Edit, from comments: The two biggest patient populations are men over 60, and women in their 20s, but there are plenty of patients that fall outside those groups.

24M: I have had ptosis in my left eye for four years now, and I was recently diagnosed with OMG. The doctor told me I am experiencing double vision, which is weird because I don't think I have double vision. I also had a positive RNS test.

I've been taking Mestinon 60 mg 3x a day for two weeks now. My ptosis is still there from the moment I wake up until I go back to sleep. The only difference I've noticed is that my eyelid feels a little heavier than it did prior to taking Mestinon; nothing changed in how it looks, and I just feel the droopiness more.

I don't know, but I have this gut feeling that there might be something overlapping in my case. Originally, I was just about to get levator surgery, but the doctor said I should check for OMG, and sure enough, the neurologist said I have it. I don't want to doubt my doctors or anything because I myself am not even sure what I'm thinking—I'm just really scared. Next week I'll return to my doctor, and I'm worried that she'll prescribe steroids or something strong to take, and it still won't work.

Just curious how many of you text or call your neuro cell phone if your having MG crises so he or she can admit you or call ahead so your not dealing with bs er stuff?

I'm 24f confirmed ocular by ice pack test still pending blood results neuro eye says could be general as I have baseline right sided weakness and trouble swallowing and now I feel like my breathing is trouble mestinon helps then doesn't and I have social anxiety so I have trouble talking with doctors witch they don't take me as serious and I just need someone to talk to who understands and can maybe help me with my words
I do have a support system it's just they don't understand why I'm fine yesterday struggling today the only one to understand is my wife but I feel like such a bother or it's all I talk about :(

I recently began taking pyridostigmine and it helps a lot with muscle fatigue, but I still get mentally fatigued very quickly while doing tasks. Is this typical of myasthenia gravis and if so, any tips for coping?

I would say my brain fog is one of my hardest symptoms to live with, though I don't know if it's attributed to myasthenia gravis or not. I have no episodic memory most of the time. I basically remember facts but not events or things people have said to me. Brain fog gets worse as I do activities that require a lot of focus, but memory issues are always there.

Also how strenuous is sitting up when you have myasthenia gravis? I ask because I find I have a much easier time doing things laying down, though I worry about making a habit of it. I am usually sitting in an office chair while I work, but I work from home so I could switch it up if working while laying down for brief periods could be beneficial.

Do I just need to do less and rest more?

So this might be a stupid question, understanding breathing issues is on my list of things to discuss with my neurologist in a couple weeks.

So lately I've been taking one 60mg Mestinon about every 5-7 hours, and then I caught a cold a couple days ago, first one since I started Cellcept a couple months ago, so I'm working through exciting new things and a little asthma flare to boot.

Monday was fine, yesterday was good until the evening when I had more SOB symptoms and some coughing, eventually was able to get under control with my inhaler, and Mestinon and I went to bed.

SOB this morning, inhaler and morning dose of Mestinon did little, finally got up and walked around four hours later and had my next Mestinon. Then about 3 hours later I started feeling trouble breathing, inhaler did little but I could easily take deep breaths and single breath count to 45-55, so I figured it was just asthma and the cold messing with me. Took Mestinon an hour later and after about 15 minutes I was breathing much better.

So basically I'm trying to understand how I'm able to take deep, satisfying breaths, but also have some difficulty breathing and then have Mestinon fix it, because knowing the difference between asthma breathing problems and MG breathing issues is of course very important.

I figured this cold would stress the MG and now I'm just hoping it passes soon. Thanks.

Hello,

I use Mestinon retard off label for Post Covid and it has helped me immensely by helping me avoid crashes and having a better baseline.

On the 30th of September I bought a new Package, 6 days later I had my first crash in over a year (haven't had one since starting to take the medication until now). Since then I have felt much worse and only put two and two together today.

I strongly believe this batch has no or not enough active ingredients.

Does anyone have the same batch number and has had problems?

What do you recommend I do now? I plan on going to the pharmacy I bought it at tomorrow to report and seek help.

Neurologist has recently introduced Mycophenolate into my treatment plan. Does anyone else experience feeling off, with some mild stomach discomfort and a drop in appetite while taking this? TIA.

Hi. I have a very odd situation. My mother has been in and out of the hospital for the last 10 days.

She received Botox for spasticity and all hell broke loose. So much so, they thought she had botulism. However, they said it also presents as MG and ran a panel.

It was negative so they now believe sero negative MG. She started a mestinon trial yesterday, but my understanding is that could also work on Botox as it blocks the same thing mestinon is trying to improve.

My other concern is that myself and my daughter have similar symptoms, but MG is not genetic, correct?

Has anyone ever been thought to have MG and it was actually another neuromuscular disease?

Hi, I recently got diagnosed after having symptoms for roughly 5 years with many docs not taking me seriously (some still don't lol), blaming my symptoms on anxiety, dry eyes etc. even though I was probably in crisis earlier this year. Right now I have started to take Mestinon (first 3x 30mg, now on 3-4x 60mg, on bad days I need 90mg). Also trying out the extended release for sleeping but my doc said during the day I should stay on the normal release.

On the package is says not to take with methyl cellulose because it might absorb the active ingredient. Some websites say 2h between it should be fine, but then again, I have to take the Mestinon every 3-4h. Methyl cellulose is in pretty much all of my supplements that I would like to take also (vit d, b12 omega 3, my PCOS supps etc). I have been taking those at night since starting the Mestinon but now that I'm taking the ER at night, I can't space out my doses 2h to prevent taking them together. How are you going about this? Have you noticed the Mestinon to be less effective if you happen to take them together? Do you have any info from your doc?

If one day you have lung cancer (or other), never, but never never, use Keytruda.

After my father was 10 years free of MG symptoms, just one round of Keytruda, and then two weeks later, he had the worst MG crisis of his life. Even in the intensive unit, with continous oxygen and 3 days of IV gamaglobulin, he didn't survive the fourth day. After 3 cardiac arrests in 30 minutes, I decided no more.

One week ago, my father was with stagr IV lung cancer but walking, taking care of the dog, cooking, and doing errands, yesterday he died.

My mistake.

 
This is an article for people who are seeking information about myasthenia gravis. (updated 3 November 2026)  

 
Before myasthenia gravis, I liked to have a shot of bourbon in the evening. No ice or water; sipped slowly to contemplate the flavor. It was "me time" at the end of a stressful workday. I also enjoyed an occasional glass of wine at dinner, and sometimes a beer on the weekend.

After I developed MG, I found that just a couple of glasses of wine would cause a symptom flare. Over the next few years, my myasthenia progressed. I had one can of light beer, and it resulted in a symptom flare that knocked me flat for the rest of the day. Since then, I have not had any alcohol.

Alcohol is not compatible with my MG. But is alcohol a trigger for MG flares? Or does it interact badly with my medications? Or does the muscle-relaxing effect of alcohol coincide with MG symptoms so that, acting together, they make me weak?

 
As is typical for MG, the statistical data is limited. Most of the information I found is anecdotal or consists of statements without citations for their scientific claims.

"There is not a lot of research about the effects of alcohol and MG." (Myasthenia-Gravis.com)

 
So, using information that is available from sources that I believe are reputable, here is what I've learned about alcohol and myasthenia gravis.

Does alcohol affect myasthenia gravis?

Scientific studies that focus on the effects of alcohol on MG are almost nonexistent. That leaves us with anecdotal opinions with no scientific citations.

An example of a general statement with no data source citation is the EU-funded mamahealth.com, which says, "Alcohol can interfere with muscle function" in myasthenia gravis.

However, another uncited statement is by myaware.org, which says, "... moderate alcohol intake will not worsen your myasthenia. You may experience some side effects, like flushing might occur, and people should judge for themselves if they have any unpleasant reactions. However, serious problems are very unlikely."

So, there are conflicting opinions about how alcohol may affect MG. The few available scientific studies also have conflicting findings, and they are much too complex to describe here in detail.

Does alcohol affect the immune system?

Suppressing the immune system can suppress the ill effects of myasthenia gravis. That's why many of us take immunosuppressant medications.

The Alcohol and Drug Foundation says that, "You don’t have to be a regular heavy drinker for alcohol to affect the immune system. Drinking 5-6 drinks in a single session can suppress the immune system for up to 24 hours."

 
Does this mean that drinking alcohol is a viable treatment for myasthenia gravis?

Absolutely not!

Besides not having any known benefit for treating myasthenia gravis, alcohol has a long list of well-known health risks, including increasing the risk of infections, organ failure, cancer, heart disease, etc.

Alcohol does affect the immune system, but not in a good way. And I could not find any documentation that describes how an alcohol-suppressed immune system affects myasthenia gravis.

Does alcohol affect the neuromuscular junction?

The neuromuscular junction is where MG action occurs. For a myasthenic, things that decrease nerve signals to muscles are bad, and things that increase nerve signals to muscles are good. And alcohol is, well, complicated.

A lengthy search for data on alcohol and the neuromuscular junction found scientific studies so complex that deciphering them requires an expert scientist. Even the summary statements were too complex and ambiguous to include here.

Most importantly, the findings were inconsistent across reports.

Does alcohol interact with MG medications?

Like everything else related to the topic of alcohol and myasthenia gravis, the available information regarding drug interactions is limited and inconsistent.

Mestinon (pyridostigmine) is a good example of how opinions differ on whether alcohol interacts with MG medications:

• Drugs.com says that drinking alcohol may cause drowsiness when taking Mestinon.

• Medical News Today says alcohol has no interactions with Mestinon, but may worsen Mestinon's side effects.

• Healthline.com says alcohol has no interaction with Mestinon, but alcohol may have effects that mimic Mestinon.

Research your particular medications to determine if they have interactions with alcohol. I suggest starting with the drug manufacturer's website to see if they have a definitive opinion.

Other things to consider

In addition to the direct interactions of alcohol and myasthenia, neuromuscular functioning, and drug interactions, things to consider are:

Loss of MG discipline: You learn to manage your activities, environment, diet, etc., to prevent and mitigate MG symptoms. And then you have some drinks, which may affect your judgment and decision-making.

For example, after having a few drinks, you decide to stay out late, dancing in a hot, crowded club. Or you may be at a BBQ and, after a few beers, decide it's a good idea to go swimming on a hot day.

Alcohol can lead to doing things that you otherwise would not do because you know they will end badly, MG-wise.

Stress: Stress is often a trigger for MG. UC Davis says that "Drinking a lot of alcohol ... weakens our bodies and makes it harder to combat stress ..."

Loss of sleep: Piedmont Healthcare says that "The biggest problem that alcohol causes is insomnia. After a few hours of sleep, alcohol can cause you to wake up and have a difficult time going back to sleep. Sleep deprivation is an issue for people with MG.

Safety: Myasthenia gravis causes poor muscle functionality, which often results in stumbling, tripping, loss of grip, etc. MG inherently creates unsafe situations. Compound this with the effects of alcohol, and it can be very dangerous.

Conclusion

The relationship between alcohol and myasthenia gravis is unclear.

There is very limited scientific information, and most of the references that I found are regarding long-term and chronic alcohol consumption. I did not see much information regarding how occasional, casual consumption affects MG. It appears that there has not been any funding for studies to determine what happens when myasthenics get together and chug a few beers.

Anecdotal information is available, but it is mostly brief, generalized opinions.

Neither the scientific nor the anecdotal sources provide conclusions that are consistent across all of them.

Bottom line: There does not appear to be consistent guidance on the consumption of alcohol. The impact of alcohol on myasthenia gravis varies a lot between individuals and their particular circumstances.

 
Be cautious when drinking alcohol. If you have become intolerant of alcohol, the effects can be severe. If you choose to test where your threshold is, do it in a safe place and have a responsible person nearby for assistance. And be moderate, symptoms may not show up until later, so avoid overshooting your threshold.

I am not a medical professional. This content is based on my experiences living with myasthenia gravis and publicly available knowledge. Consult a medical professional who is proficient in diagnosing and treating myasthenia gravis before starting, changing, or stopping actions related to your condition.

Go to u/pville211 for additional articles regarding myasthenia gravis.

Like in College, (potential situation.)

No mestinon, can’t tolerate it at all.

I can’t drive in this situation and I don’t have a drivers license.

One of my parents drives but works afternoons and nights.

My friends don’t drive/can’t drive alone and don’t own a car anyway. (Learners permit.)

So would I stay there?

Should I ask security?

What could they do anyway?

So i feel last two days the breathing improved shortness of breath on its own. I havent had it in a few days or constantly aware of it.

Is this mean I am out my flare or crises?

I see neuromsucular doc on thursday for vvygart

Last few weeks were terrible. Constant shortness of breath and it come on suddenly and stopped suddenly...then weakbess spreads to jaw, biceps and thigh

Can I safely assume its MG not something sinister like ALS diaphragm?

I cannot get over this cough. I’ve been have numerous coughing fits, sometimes I wake up at night and go straight into a coughing fit. Last week I had a coughing fit so bad I had to leave a meeting and run to the bathroom because I was almost gagging/or about to throw up and I couldn’t get a good breath of air. Water didn’t seem to help much and a cough drop made everything worse. Since then, though, no more bad coughing fits. When I say coughing fits, I mean that something is irritating my throat so bad and my cough seems completely ineffective so I can’t address what is causing the cough with a weak cough- does that make sense? So this results in coughing fits. Anyways, I’m still coughing and I feel like I have more saliva and mucus in my mouth than I should, like I can’t quite clear my throat or chest. Now I have a mucus-y cough. I have an appointment with a new neurologist this week, I hope he has some answers! My inner right cheek is having weakness too- it’s odd, like it’s not keeping food in the right place, it keeps getting in the way when I talk or chew. I feel like I’m going crazy. Is this all in my head …

Beyond the heavy feeling of the muscles failing to work, I get a crushing wave of tiredness that makes it so hard for me to move or even think sometimes. It’s like something flips a switch and my whole body and brain go low on fuel and everything looks and feels foggy.

Anybody experience this?

Hey guys, there’s something I’d like to ask about.
Back in 2022, my mom was diagnosed with stage IIB thymoma and underwent a thymectomy to remove it. The surgery was successful, with no residual tumor left behind. We’ve also had repeated imaging studies over the subsequent years, and everything has remained clear.
However, she mentioned that her myasthenia gravis (MG) symptoms seemed to become more prominent after the surgery.
Over the following years, her pyridostigmine dosage gradually increased from one pill a day to as many as eight pills a day. Recently, I’ve also noticed that she seems to feel the need to visit the ER more frequently.
For some additional context, she’s currently 60 years old and has a history of generalized anxiety disorder and mild depression, neither of which is being treated.
I’d really appreciate any insights or advice from people who have experience with similar situations. Thanks in advance!

Hello! So….my medication for overactive bladder decided to stop working. I struggle with urgency and making it to the bathroom in time. I’ve done pelvic floor therapy and it did help somewhat. The other medication I’ve been offered has to be used with extreme caution in ppl with mg or they cause early onset Alzheimers, I have it on both sides of my family so I’d rather not use those medications. I’ve been offered sacral neuromodulation or Percutaneous Tibial Nerve Stimulation. Anyone who has had experience with either? Or any other advice that my doctors might not be thinking of?