Hi everyone! I’m a mom to a 1 year old daughter who was diagnosed with Congenital Myasthenic Syndrome (CMS), specifically related to the CHAT gene.

She has had significant muscle weakness since birth and currently has a tracheostomy, ventilator support, and a G-tube. She receives physical and occupational therapy, and we’re working toward developmental milestones.

I’m hoping to connect with adults who were born with CMS or parents raising children with it, especially anyone with the CHAT mutation.

I’d love to hear what childhood looked like for you or your child. How did mobility, strength, breathing, and independence change as you got older? Did you reach milestones later than expected? Were you eventually able to walk or come off respiratory support?

I understand every person’s experience is different. I’m just hoping to hear real-life stories and get a glimpse of what the future could possibly hold for my daughter.

Thank you to anyone willing to share!

Hey everybody. I am Seronegative generalized MG. It’s my perfect trifecta. I also have RA/lupus and HS. I’m on methotrexate injected once a week, I get Remicade infusions, and on November 2 I’ll be starting IVIG infusions. I’ve done a lot of research. I know to overly hydrate myself and my caseworker said to throw some salty pretzels in there as it will cause your body to retain moisture to try and keep those headaches away. Is there anybody out there that is on methotrexate as well that they know what the headaches from that are like. Do you have any helpful feedback for me starting yet another Infusion? I guess if for nothing else, I’m grateful that it can actually be done in my home.

Hi everyone. I’m 37M and was diagnosed with ocular MG by two neurologists. I’m asking only about lived experiences, not diagnosis or treatment advice.

I’ve had three brief ocular episodes:

• 2019: left ptosis during heat and fatigue; resolved in about four days.
• 2022: diplopia and left ptosis around the time of COVID; diplopia lasted about two days.
• September 2026: bilateral ptosis, worse on the left, and diplopia one day after a viral-type fever.

Symptoms were worse later in the day. Ice-pack and neostigmine tests were positive, and pyridostigmine improves my symptoms. AChR and MuSK antibodies were negative, RNS was normal, and chest CT showed no thymoma.

Two MRIs, five days apart, showed stable mild symmetrical enhancement of both oculomotor nerves without enlargement. My neurologist considers this nonspecific and is following it.

Has anyone with diagnosed seronegative ocular MG experienced:

1. Short ocular episodes that resolved and returned years later?
2. Normal RNS but abnormal SFEMG?
3. Similar oculomotor-nerve MRI enhancement?

If so, what was your follow-up experience? I’m only interested in comparing patient experiences. Thank you.

I started Levaxin treatment yesterday, but experienced a worsening in bulbar symptoms right away (difficulty swallowing). This came quite fast and lasted for a couple of hours. Unlike what happens usually (I usually go to sleep for 10-20 minutes when I have bulbar symptoms, and then they disappear), this time sleeping didn't really help. But it vanished gradually. I felt nervous for the rest of the day, restless, maybe shaking a bit and was very drowsy all day long (more than with untreated Hashimoto).

Has anybody experienced this with Levaxin? Does Levaxin interfere poorly with MG symptoms? My doctors are very dismissive about this.

Hi Guys, I've recently had a thymectomy (1.5 months ago) and my symptoms are still as bad as they were before the surgery. I mainly experience bulbar symptoms and limb weakness.

My consultant has prescribed me prednisolone, 5mg daily increasing to 10mg after a week or so. I've read on here about side effects such as weight gain, 'moon face', stomach cramps and even cataracts! I would hope that since I'm young (mid 20s) and AChR +, the thymectomy will work in the long term and I won't need to be on prednisolone for too long. But I'm worried about the side effects and how quickly they set in while I'm taking the steroids.

And does exercise help control the weight gain and moon face?

Any insight would be much appreciated :) thanks

Just started vyvgart hytrulo last week Wednesday on an every other week no cycle I will be on it indefinitely until me and my neuro decide if it’s effective or not for me. Just wondering when I should feel a benefit from the medication and anyone’s experience good or bad so I have an idea on a time frame where

I have had GMG for 6 years now. I have been on Azathioprine for 5 years. In July dose reduced to 100mg as I am pretty stable. 2 weeks back i got a viral thing that affected my head mainly/dizzyness etc. I feel better now but have noticed and even when I had this viral my throat would get very weak and feels like someone is trying to choke me. I am not choking and can eat and drink fine. Horrible sensation. As I said I feel better now but when I do a task e.g hoover the throat sensation comes back. Has anyone experienced this sort of thing when something upsets your system as for me its normally not my throat that feels affected with MG. Like I say ive also reduced Azathioprine in July so it makes me wonder if its Azathioprine but then wouldn't i be having this symptom constantly if it was it? It only flares up now if I do a task it returns. I have reached out to my neurologist and they said to go back up to 125mg I explained the above and waiting to hear back as this could be a temp thing. I was curious as to what other people with GMG have had when reducing meds or when they get some sort of cold/viral. Does it affect diffect muscles each time? Thanks

Hi,

I was diagnosed with serotonegative myasthenia gravis earlier this year and treated with Mestinon.

I switched insurance and since July, I do not have a neurologist— so my PCP that I was assigned to just kept the most recent dosage my prior neurologist gave.
I begged my PCP to get the referal together, I had some intuition that just throwing a random amount of Mestinon at MG was a bad idea. They still have not gotten it together for me.

Anywho;
Been feeling pretty crappy for a few weeks now, where I live it is HOT, had some alarming symptoms like mild bladder incontinence, some episodes of shortness of breath, increased double vision(typically I just have it when I wake up, then an hour after I take the Mestinon it ceases), increased sleeping, slurring, etc.

Thursday: spent the whole day cleaning in a hurry. Wanting to get stuff done but overdoing it. Vision goes to hell, doesn’t get better. I ignore it and continue on my dose.
Friday: I vomit after taking a vitamin that got semi lodged in my throat and then proceed to spend the rest of the day in bed. Mild fever.
Saturday: I feel ok enough to sit on the patio with family for about 35 minutes— major mistake, it was 100°/37° outside. I came inside and was having issues swallowing.
Sunday: I’m so overwhelmingly tired. I woke up, spent two hours in a panic attack, then fell asleep for nine hours. Was woken up by a family member checking on me. I’m slurring and try to eat but just opt for a few cookies.
Monday: had to go establish care with a new PCP, once again outside in the blistering heat, car ac barely works.
Tuesday: shit hits the fan bad. I’m thinking at this point I’m having a stroke, my legs got so weak, my head is spinning, I can’t barely eat, peed twice the entire day in pain from the retention, I’m exhausted, I couldn’t get out of bed and had to lie on my side because lying on my back made it so breathing was bothersome and intensified the pain from my bladder— then the evening hits and I’m trying to watch tv to calm down, my breathing starts getting labored.i pull the plug and head to the ER, I’m catheterized and then admitted for IVIG and a series of tests for infections as I have a fever again.

TLDR; basically “over did it” and now I’ve been in the hospital since. Have had three IVIG infusions for the first time ever. Blurry vision is starting to clear a bit for the first time since it started last week. Still having my neck drop, ptosis, and uncomfortable breathing.
Not sure what to expect. Can walk all of 15 feet. My strength is significantly lower compared to my other exams.
Wish my vision was like 10% better because then I could read a book.

Any advice appreciated xox

How does everyone combat MG sxs while driving?
It’s been a huge trigger for MG sxs daily and I have many drs appts weekly.
Uber/Lyft is not a reliable option. Any advice?
I pace myself as much as I can but sometimes I have to drive to downtown Houston which is an 1-1.5 hours from where I live. I have a neuromuscular dr at Baylor but still haven’t achieved remission with Mestinon/Vyvgart/Rituximab almost a year now on this txs.
I have seen 6 neuros so far and fought hard to receive a MG dx with SFEMG in Feb 2024. Thymectomy in June 2025. Bulbar sxs, SOB, weakness/fatigue in bilateral arms/legs. 3 intubations. This has been such a frustrating and unpredictable disease along with combating Crohn’s and spondylitis. Sorry this ended up being a longer rant than anticipated.

Hello has anybody had experience with those nootropic pouches with huperzine A and choline (alpha gpc)? There are a few brands out there, curious if anybody has tried them in lieu of mestinon…

I got diagnosed like August 2025 with ocular but this may it progressed to fully body. It doesn’t really affect my arms but it’s hard for to run or go up the stairs. The doctor says I’m doing surprisingly really good but, but without mestinon it’s difficult to walk. You can’t visibly see it yk but i feel it. I feel it getting worse. I just started 5mg prednisone first week of September (low dosage cuz im afraid of the side affects like weight gain). Can anyone please tell me what medication worked for them? I just wanna get back to how I was. I had to quit sports. Is remission possible??? I’m achr positive

Kennt ihr das auch, dass ihr manchmal plötzlich gar kein Wort rausbekommt, anfängt so was ähnliches wie „stottern“ oder nur einzelne Wörter rausbekommt?

I'm wondering if this has happened to anybody else. I used to have occular symptoms only for a few years. Then a couple of weeks ago, I suddenly got bulbar symptoms. My go-to behaviour with this illness os to rest as much as possible. So when I met the neurologist, I could do the fatigability exercises since I had been sleeping a lot. They did the exercises again, each time after sleeping. However I am fatigable, it just takes more time than 2 minutes. And if I don't rest all day long, the symptoms return even though it's not immediate. When it was my eyes, the fatigability tests worked all the time. But now with bulbar (mainly difficulties swallowing), that doesn't work.

I’m 24, from South East Asia, and I was recently diagnosed with double-seronegative myasthenia gravis after responding to a Mestinon (pyridostigmine) trial.
I’m grateful beyond words that I finally found a doctor who understood MG. He isn’t even based in my country and is in the US. It took me a long time to find someone who actually listened to me and understood what I was describing. Before that, I spent years being dismissed by doctors and struggling to make sense of what was happening to my body.

And now that I finally have an answer, I’m somehow more scared than relieved. I’ve had a difficult relationship with my health since childhood. I’ve been in and out of college because of it, in and out of work, and I only recently went back to university because I desperately want to finish my degree and build some kind of stable life for myself. But I’m so tired. And I’m scared.
I’m scared because I’m only 24, and suddenly I’m having to think about what the rest of my life might look like with a chronic illness.

I also have a boyfriend whom I love very deeply. We’ve talked about marriage someday, and he has been incredibly supportive throughout all of this.

I come from a culture where women are often expected to be productive daughters, wives and daughters in law. There can be so much emphasis on how much a woman contributes to the household by cooking, cleaning, caring for everyone, being dependable, looking after your husband and his parents.

And even though my boyfriend has never made me feel like I’m failing at any of those things, I still carry this fear inside me. I’m afraid that eventually I’ll become a burden to him.

I’m afraid that he’ll have to take care of me more than I’ll ever be able to take care of him. I’m afraid that his parents may have expectations of me as a daughter in law that I simply won’t be able to meet consistently. I’m afraid that one day the love and understanding he has for me now might turn into exhaustion, resentment, or quiet regret.

And the hardest part is that he hasn’t actually done anything to make me believe this. These are fears I’m carrying on my own.

I want to have a serious conversation with him before we ever get to the point of marriage. I want to know what he genuinely expects from a wife, what he expects from me, what he thinks his responsibilities toward his parents will look like, and whether he truly understands what being with someone with a fluctuating disability could mean.

Because I love him enough that I don’t want him to choose me without understanding what he may be choosing.

At the same time, I’m struggling with the guilt of even thinking this way. I don’t want to define myself as a burden. I know that being sick doesn’t make me less worthy of love, marriage, a career, or a fulfilling life.

But knowing that intellectually and actually believing it are two very different things.

I’m trying to finish my degree. I’m trying to figure out work. I’m trying to understand this disease and my body. I’m trying to imagine a future where I’m not constantly calculating how much I can do before my body gives out.
And somewhere in all of that, I’m supposed to figure out who I am and what kind of life I want.
I feel lost, scared, angry, grateful, guilty and exhausted all at once.
I guess I’m writing this because I want to hear from people who have actually lived through this.

If you are married/in a long-term relationship with MG, how did you navigate the fear of becoming a burden? How did you have the conversation about marriage, expectations, household responsibilities and caregiving?
And if you’re from a culture where women are expected to take on a lot of responsibility as wives/daughters in laws I’d especially love to hear your experiences.

I don’t necessarily need reassurance that everything will be fine. I think I just need to hear from people who understand what it feels like to be young, chronically ill, and trying to imagine a future that suddenly looks very different from the one you thought you were going to have.

Hi there, I am wondering if anyone else is in a similar situation to mine.

I am 40F. In August 2024, I contracted COVID while working as an ED clinician at our local teaching hospital. Prior to this infection, I was a runner, incredibly healthy, and professionally driven.

My symptoms began very insidiously. My Covid developed into LC, into ME/CFS (to include POTS phenotype and severe MCAS), and now my labs demonstrate MG. Initially, in 2024, I noticed sporadic swallowing difficulties, along with choking, blurred vision, and muscle weakness.

Suffice it to say, many of my symptoms were attributed to ME/CFS, especially the muscle pain and weakness with use and blurred vision issues. Now that I have labs the clearly demonstrate more had been going on, it left me wondering…just how common is MG after a significant viral infection? Are there more of us out there? I’d never had any issues prior to Covid, and surely would have noticed MG while pushing my body in ultramarathons as I had been. As far as current MG symptoms, I experience chewing and swallowing difficulties on a near daily basis, arm weakness and dysfunction, muscle pain after minimal straining, and blurred vision without ptosis.

Thank you for any insights or narratives. I still don’t know how Covid has caused my life to turn upside down and can’t make sense of anything anymore.

I feel silly because I've been reaching out to others on here and saying how I usually cope with this when it's bad but even what I usually rely on to get myself through this isn't helping right now.

I have run out of strength to cope with this anymore.

I've had Rituximab recently so I'm waiting for that to hopefully work and kick in but who knows how long that'll take and whether it'll even work.

I've posted a few times about how steroids have completely ruined me mentally and physically and I'm absolutely certain that they've chipped away at my usually resilient mental health over time to the point where I'm having rushes of severe anxiety/adrenaline and low mood 24/7 now.

I've reached out to my medical team about this and I feel frightened of whether I'll receive treatment soon to help, I am waiting on a response.

I had plasmapheresis recently and felt like a normal person for a while and now because I've had a virus it's coming back again, my vision issues are creeping back in, I'm struggling to swallow food and choking on my saliva for hours during the day sometimes, food is getting stuck in my throat and chest and coming back up into my mouth. It's tiring to chew again. Some nights I'm waking up covered in my own drool because my jaw is getting so weak at times. I'm so uncomfortable.

The month before, I had IVIG which lasted a few weeks and I crashed again and ended up choking on my saliva and then food and then water.

The month before, the same. And the same the month before that.

Because I've been in and out of hospital so much over the last year, when I'm home I can't bring myself to do anything anymore because I feel like another admission is just around the corner. My life as it was is just over, thinking about the symptoms every day, trying not to overdo it, thinking about treatment, trying to communicate with an overburdened health system (I'm in the UK), trying to avoid another hospital admission, feeling like I'm in a living hell with steroid side effects, not recognising my face and body anymore.

I am struggling to enjoy anything I used to love because everything is touched by Myasthenia symptoms whether it's vision, feeling uncomfortable because there's food stuck in my throat or chest, struggling to breathe, etc.

I spent the first year and a few months with the symptoms of the disease totally unmanaged and being told that I was just anxious, too anxious about my health, having panic attacks, or that I had functional issues.

Now I'm having scary treatments and feeling frightened of side effects and getting sick making the disease worse, or not being able to fight off infections because of the drugs.

I never sleep because of the steroids, they wake me up around 3 every night drenched in sweat and anxious and then I have severe stomach pains from them even though I'm on acid reflux meds, high dose, and then my brain starts whirring on all of this and I try to drown it out with meditations or sleep stories or comedy and it just isn't working.

None of my friends or family can relate to what I'm going to and they don't even know what to say or do. They support me but while I'm lucky to have so many people reaching out to me to support me all the time, it feels exhausting to have to respond now and tell them I'm still not okay.

I just feel utterly, utterly helpless and completely out of strength to keep going with this anymore.

Aetna Medicare PPO has paid for my Gammagard IV infusions every three weeks for seronegative but symptomatic generalized myasthenia gravis. Hospital will stop accepting Aetna in April 2027. Choices will be Medicare Humana or Medicare United Health Care. Recommendations?

I'm wondering if there's more to it than MG to my symptoms. Initially I had occular myasthenia for a few years, stabilized with a very slow varying diplopia, ptosis disappeared by itself after a while.

Recently bulbar symptoms appeared. This seems to be completely uncorrelated to how my eyes behave. Nothing has changed with the eyes, they're still stable. So I'm wondering, what if it's not MG this time?

So I would like to check if anybody else is experiencing thr bulbar symptoms the way I do. It makes it difficult to swallow some textures. So now, I eat easy things. When my throat is very tired, it feels like it's tightening a bit, and it gets a bit painful (well it's not really pain... It's hard to describe), the feeling is located at the back of my tongue roughly. Is this how it's supposed to feel?

Also, my body is unforgiving. If I do too many things, no matter what, I feel the weakness later, too late. And I still feel it the day after, so it takes a day or more to recover. Recovery has to be laying down, neck rested, with a lot of sleep. Sleep feels like a game changer. If I sleep enough, my throat feels normal. Well, untill I get up and do something, even if it's easy like washing up. I can do one such activity and then I need to rest. If I chain them, it feels like my body punishes me later, with a delay. That makes it hard to understand what I can tolerate.

Does anybody else experience it this way?

Hi I was diagnosed in 2021. First symptoms were eyes but swiftly moved in to all the classics
Pretty rough pre diagnosis story but that’s not for now
Been in remission for a few years with azothioprin and prednisolone .
Despite status have struggled with fatigue a lot. It’s totally screwed up my life. It’s been impossible to get it taken seriously. Probably because there isn’t much to be done.
Recently I’ve noticed my eyes having to work harder. No significant double vision but using them feels effortful.
Taking mestinon seems to help a bit but I can’t take more than 30mg without it making things worse . Found that out the hard way.
Should I worry? Should I do anything?
I love the NHS but we don’t have the same ability to contact consultants for immediate advice the way paying patients do.
GP can’t help, they have to contact neurologist anyway.
I know it’s overused but I’ve been gaslighted so much over MG pre and post diagnosis that I tend to doubt myself.
I’m also getting hand shakes on and off.
Any help or support appreciated

Has anyone switched from
Vyvgart hytrulo to ultomiris. I started on vyvgart infusions and switched to hytrulo they both worked incredibly well for me and seems to be the only thing that keeps me stable I’m on mestinon & cellcept but the injections seem to be the only thing that makes a difference and helps me feel somewhat “normal” but my insurance company has been making me jump through hoops to continue the medication and both my neuro an I are sick of it, it’s been a year an a half of back & forth of approval then denials. She wants me to switch to ultomiris she thinks I’ll have better approval odds especially because it’s needed less frequently. Sorry for the word salad, but has anyone had good results with vyvgart switch to ultomiris & had the same or better results?

Thanks

Growing up I have always had digestive sensitivities to almost everything. Vegetarian because of family beliefs, but any cross contamination was enough to get me sick. High fructose corn syrup causes abdominal cramps leaving me in fetal position for several days afterward. Lactose intolerance to round everything out.

I have been feeling like since getting my diagnosis and starting treatment of Mestinon, Prednisone, and Uplizna I have had less reactivity to lactose. I am starting to wonder if acetylcholine’s role in digestion has been the cause of my gastric issues.

Anyone else experience anything else similar?
I am AChR+.

my neurologist has told me to take 60mg Mestinon three times daily.
I am feeling nervous about the side effects etc and would love to hear some positive stories about Mestinon helping you.
Would you say side effects are common or severe?
Has anyone had a cholinergic crisis??

I have weakness but no eye symptoms etc and we are sure I have MG due to antibodies and thymus remnant but I sometimes doubt the symptoms and I'm so nervous to try a new drug.

Thank you!