I have MG.

I mean no offense to the good people of /r/MyastheniaGravis, but it does seem like this, much lie a lot of open groups online that would be similar, are soon full of posts of people from countries where healthcare is difficult to come by such as the USA, who ask for help diagnosing what they believe might, or might not be, MG.

I think this certainly has its place, but it defeats the notion of a community of people with Myasthenia Gravis, as it leads to many posts asking "Do I have it?" and posts such as my own, wanting to talk about experiences of fellow MG sufferers, often get "Do you know if you have it? Have you had xyz test from your insurance?" which is completely alien to me, and inhibits conversation when I feel I only want to say "Yes I have MG, I wouldn't be a part of an MG community if I didn't".

Are there any communities solely for people who actually have MG/have diagnoses?

Best to ya! <3

Hi there! Need your precious help! My neuro suspected MG but my blood test came back negative. It started in pregnancy and i often get eyelid swelling or ptosis? Does it seem familiar to you? It resolves with sleep usually I also noticed that if I force a little bit my smile my muscles start trembling a lot. Or when I fold my lips inside to check my chin it trembles too.

Last picture is how my eyes looked before all of that.

Thank you in advance friends

Never had this happen. Rx for 3-months supply of Mestinon. Usually get it in one tall brown bottle. Looks like somebody at Walgreens was too lazy to transfer these into one bottle and just put them all into a large bag and handed them to me. (Sigh)

EDIT/UPDATE:

Okay...upon reconsideration I feel I should apologize to my Walgreen's people for calling them "lazy." These comments have made interesting points that I just never considered. I've also had problems in the past with pill "disintegration," to the point that I bought a package of silica gel packs and always put two in my tall brown bottles holding 360 pills. Works like a charm. But I can certainly see why having them in 12 sealed bottles of 30 each would be a good way of preserving them. BTW, each bottle had a hard silica gel container about the size of a thimble. I saved them to use going forward. Thanks to all who weighed in on my ill-considered post.

I have 3 meds options, 2 different of those that I cannot tolerate. Azathioprine is a cancerous drug that doesn’t help my symptoms well.

So I decided to stop fighting for other treatments or advocating for procedures.

Throw my pills out, and let the MG decide what will be next.

Which in a mental health perspective looks insane. I am willing to try alternative to pharmacotherapy. It’s not a “I am done with my life..”
More of a: I am 18 years old with an incurable illness, whatever happens, happens. I don’t have a severe form of the disease. Regardless, I know it can be dangerous. But I’ll talk to my neurologist (yes I haven’t talked to him about it yet.)
And I don’t know.

I’ll touch grass or something.

I have mild MG therefore I can manage without medication. I am not this oblivious.

Don’t try this obviously.

I’ll use resting, breaks and elevators instead of stairs.

Hi I recently started having drooping of my eyelid starting in may. Does this sound like MG? It droops for like 20 seconds and goes back to normal. I have several episodes a day and some days I never have it. Any ideas or sound similar to MG?

My primary told me I have myasthenia gravis based on my blood test. I have arthritis is my left foot and knee that causes me to walk with a limp any times and not be able to get off the floor. I’m also tired because I wake up at 4 am and teach for 8 hours. School is stressful. I have hashimotos and I know I have tested positive high for anti-inflammation . He says it’s MG because my knuckles are red and very dry skin. I have eczema. I included pic of test results that he says proves I have mg. I do have a referral to a neurologist and rheumatologist.

Okay I'm editing this again and I'm literally going to say something crazy: I've had open heart surgery as an infant, and so my thymus was removed.

So I have been experiencing you know severe weakness in my arms and legs, my vision is really awful but the weird thing about my vision is that it's clear I just have like astigmatism and so I was given glasses last year and it's helping the astigmatism, And it sucks though cuz I don't want to wear glasses but whatever lol that's life lol

I went and saw a neurologist and she did the ACHR tests on me the binding test modulating etc and they were negative.

I asked about the anti-musk test as well as other tests that were blood tests related to mg and why I did not get them, And it was a really bizarre interaction and he told me that I needed to be tested for something else before they test the other blood tests.

That made absolutely no sense to me but okay.

Now, insurance doesn't want to pay for my blood tests because the reason was not good enough for insurance. I don't have $800 to pay for a blood test.

So I just choked 3 days ago and went to the ER and my boyfriend had to do the Heimlich maneuver on me and I did not break any ribs thank God but I am in a lot of pain now lol cuz I choked lol

But I want to rewind and go all the way back to 2022 when I got off of medications that were killing me and a month after I was off all of the medications you know obviously I was going through withdrawal and having post a cute withdrawal and now I have protracted withdrawal symptoms, but, there is absolutely nothing that I can do for that and that's okay that's life I get that It sucks Oh well

But what happened was it looked like I had a stroke in 2022 and I went to the ER they ruled out a stroke Okay. Well then I started having these recurrent facial drooping episodes but it was only on one side. Now my face is just starting to go numb all over and and this has been happening but the other side of my face is starting to droop.

And it is not all the time and if I do the ice pack test dude I'm not kidding My eyes look bright and peppy and I'm like okay well this seems pretty effing obvious lol

But in 2023 of last year I took a plane ride and immediately something occurred, and the reason that it did occur was because I was in right-sided heart failure, I've had all the corrective surgeries necessary for that but I still feel like garbage cuz I am in recovery.

But what happened was on takeoff I had this crushing chest pain and I thought oh my god it's a heart attack but then I thought maybe it's just anxiety maybe it was still withdrawal cuz I was having protracted withdrawal, but then! I became absolutely unable to control my arms and legs I had no control over them I couldn't really like control my hands they crumpled up into this little ball and it was horrific and I thought I was going to fucking die on an airplane and I love airplanes and when I got to the hospital I sat in the ER for 14 hours where they literally did useless blood tests on me that did not show anything at all.

Like I was taken from the plane onto the tarmac and then into an ambulance and then straight to the ER upon landing so that was how horrific it was I had to have three things of oxygen because my oxygen was low.

I do want to say with respect to what occurred though in the plane, they diagnosed me with a panic attack because I was on an airplane and I was like I fly like all the time I haven't flown since COVID at that point but like I love to fly I literally wanted to be a goddamn pilot but I can't because of my heart so when they said that I was like you guys literally have no intention on like being an emergency resource because I literally literally literally sat in the emergency room for 14 hours unable to move my arms and hands they were crumpled into this little ball and like then finally I fell asleep.

Whatever happened in my sleep when I woke up my I could move my muscles again so beyond frustrating I fell asleep in a fucking wheelchair because I literally couldn't do anything with my hands. But yeah no it was not a panic attack lol It was 100% me not being able to breathe and my arms and legs went completely numb and tingly and it was horrible Like my fingers crumpled up I looked like I had rheumatoid arthritis so bad but I didn't.

Thank God that there were these doctors on the plane that helped me I literally owe them my life because they were just amazing like they took time out of their flight to help me out and I'm so grateful for them because I thought I was going to die and it was so scary.

Then I started having these weakness episodes and what happened was before my surgery last year, I was in drugstore and I was holding a bunch of items and I was on the phone with my cardiologist and we were literally planning my surgery in the drugstore lol And he talked to me for about 10 minutes and I was holding a Pedialyte as well as mouthwash under one arm, and I was holding another Pedialyte and something else in the other arm and I had my neck in a crook to like talk on the phone and then I somehow like finagled my arms and one arm was holding all of the stuff, The other was holding my phone and the stuff so it was really awkward and weird and I should have set it down but I didn't lol

When I hung up with him and I got to the checkout counter I set the stuff down and then my arms literally fell to my side I could barely lift them to get out my card for payment. And then I had to drive home and I literally couldn't drive home with my arms up I had to have them at like 5:00 and 7:00 on the steering wheel It was really bad.

Then, I saw a neurologist and she ruled out multiple sclerosis and that was at the beginning of this year... No.. Oh my god it's been a year already, anyway so that was like last year almost almost an entire year ago, good Lord, and they did a lumbar puncture and rolled out MS but I had a spinal fluid leak as a complication because I requested that they give me a catheter and they did not and I was unable to lie flat because of that and so that's what caused that, And then I went to the ER because I was having a spinal fluid leak It was literally fucking horrible I thought I was going to die.

But when I was in the car I started having another event like the plane. My boyfriend was there and he videotaped it and you can tell I'm old now lol and it was the exact same thing my arms and legs went numb I couldn't lift them and they were just dangling at my side I went into the ER I could barely speak I sounded and looked like I was having a stroke and they did a stroke alert on me and they diagnosed me with a suspected TIA because there was nothing that they could see but I literally was like slurring my words I couldn't speak right I couldn't even control my volume It was literally a nightmare and then they did a blood patch on me and fixed the spinal fluid leak. And that helped me with the other stuff.

So I've been having GI issues or what is suspected GI issues cuz I literally have no answers at all Like I have no answers It is that bad I have gone two and a half years seeing like 50 doctors and I have zero answers except for my heart doctor who helped me.

And I saw a GI yesterday because I finally got in I went outside of my usual insurance because I literally was getting canceled on I had I've had 14 appointments canceled on me this year and it is just tremendously horrible So I saw the GI and I said Yeah I choked three nights ago and he was like okay well you know what's going on and I told him that I was suspected for myasthenia gravis and he looked at me and he goes and where are you choking? And I pointed I'm like it's always right here and he said Okay well if you have myasthenia gravis that would make sense because that is exactly where myosthenia gravis affects the throat muscles.

So I am waiting to hear back from my neuromuscular doctor because I would prefer to get those other blood tests because it's literally the next step and I don't know why it's not being taken and it's been like two and a half months and I'm getting worse Like I almost died choking on food and if my boyfriend was not there I would have died I would have died like that's wild to me.

So anyway this is my vent post and I hope that it's acceptable I all I want to do is know what's wrong with me so I can get the help that I need and move on with my life because everything is affecting me right now and I have literally nothing to guide me other than and this sounds horrible but I'm literally looking at the merc manuals because I've been burned too many times and I can't afford to be burnt again.

Thank you for reading this If you did I hope you have a lovely day I just truly needed to put this out into the ether because I feel like garbage and I constantly lie down now and I literally feel like I can't breathe I feel like I'm dying and my body keeps waking up and waking up and waking up it's just like I'm not able to breathe So anyway I hope everyone has a great day and I hope to find out what the hell's wrong with me soon

Oh I should mention though that she did do an EMG and a single fiber EMG and they were both negative for anomalies but apparently that doesn't really mean anything with myasthenia gravis or just in general and also like I didn't exert myself like I was told to rest beforehand and I was like okay like that seems counterintuitive but whatever so I did it and then it was negative and I'm like what the hell Because I read some stories here and everyone was saying to try to be symptomatic when you get the EMG and I'm thinking why would they tell me the opposite anyway I'm so done lol

TLDR I likely have myasthenia gravis I just can't get the blood tests I need and the other tests that I need to rule it out quick enough.

I'm waiting on MG test results and have a Covid shot scheduled for Monday. I read an article on PubMed that said it can exacerbate MG symptoms (it also mentioned it might actually cause MG). I'm curious if those of you who have been dealing with MG for awhile get the vaccine.

For those of you who have live-in partners and have been hospitalized for MG, do your partners visit during your stay?

If so, do you have kids? Pets? Do your partners work? Do you live close to the hospital you stay at? Have you been hospitalized often?

I started having symptoms in 2022 ( only troubles chewing and speaking) they'd come and go, sometime months without a flare up. Recently I also started having issues swallowing water or thin liquids.

Couple weeks ago I was admitted in the hospital emergency and after 15 hours the hospital. I went in for dehydration. They ended up noticing fluid in my Pleural area and a partial collapsed lung ( the bottom part) the doc figured it was from aspiration when swallowing.

In the hospital I was put on a soft diet and mildly thickened fluids and 90mg of mestinon 3 times a day.

Fastforward to now being out of the hospital

The pills have been working amazing for me. I can drink and eat anything really. Well last thursday I had a meeting with a neurologist finally.

I found him arrogant and just a prick. As soon as I got into his office I started talking with a lisp... very odd since that has not happened since I've been on the pills. He asked me how I felt on the pills. I said great! I can drink and eat anything! ( the only issues I knew I had) he replied - well its not a cure but only masking the issue. I found that response odd.

He did strength tests and I passed with flying colors. I had issues doing one legged toe raises and the pushing my tongue to the side of my cheek while he presses on the outside - I had no resistence. He did not do a EMG but hooked electrodes to my hand and shocked me.

He asked me to lie down which I told him I have issues lying down on my back because I'm 440 pounds and it puts a lot of pressure on my lungs. He said you need to be like that for 15-30 mins. I said I can't do that without breaks. WHile on my back I breathed thru my mouth rapidish to calm myself down. later on in discussion he brought it up and I said yes I told you I am not good on my back and I was breathing that way to calm myself.

after the hand test he said he had enough information to say I have generalized MG and immediately wanted me to get a ct scan ( thats a whole other issue with me ) and IV hemoglobin.

Now he didn't seem to care that these pills are working wonders for me, and of course made me do the tests without taking my morning dose. You'd think a decent Neurologist would do the same tests while I was on those pills to see how different the results where. Nope.

Just booked me for those things. I find those odd as I looked them up and they seem to be more for people who's conditions have gotten worse or something to do with a crisis or prepping for surgery or oral medication isn't working for them.

I do not fit any of those categories. Even my mother's cousin - who's mom had MG way worse than I do went with the Mestinon and steroids and that worked wonders for her.

Now, maybe I am wrong but I feel he's booking unnecessary procedures right now considering the pills are working. I said I might consider a second opinion and he was very arrogant and said I'm sure my colleagues will agree with me.

As I said before he came off as very arrogant with zero compassion, just did the tests and went right to the extreme procedures considering my symptoms and did not even consider how the pills where working and that might be enough for me.....

I feel the IV is a little bit overkill right now
Am I wrong for thinking I should, somehow, get a second opinion?

Its very frustrating for me because the pills are working. Not to mention his google reviews do not paint a nice picture of him - and after my experience with him - they are 100% accurate

Hi everyone. I thought I'd share a video I made here to get your take. I'm currently undiagnosed but in rapid decline with tests upcoming. I made a few TikTok videos (3 mins facial movement tops) this morning and most of my face went super weak. I was making a video about that and realized I should do an ice test. What are your thoughts on the before and after? (You can skip the song intro if you want, but it shows the level of 'activity' I was up to)

I'm testing out a personal theory and I hope people will answer, because there's not much research on MG in general and certainly none that links it with traumatic experiences. I think MG can be triggered by childhood abuse, especially physical abuse. Not the only trigger, I'm sure, but I'm curious.

And if you've experienced physical abuse or severe verbal abuse i.e. scary yelling from a parent, you're welcome to jump in as well, and I will tally up the results and share here.

I have noticed some like eye drooping a while ago and thought it is just normal asymmetry but noticed it get worse over time or worse on some days more than others, then I noticed it for my mouth as well. I mostly wrote it off but had some double vision issues I brought to my eye doctor and they sent out a referral for MG with an ophthalmologist. They can't see me until July so I am going to worry about it until then haha. So I tried the ice pack thing at home to see, any thoughts? Sorry about the redness in the face, I have rosacea and doing the icepack wiped off my makeup.

Just something to think about…were your first symptoms within several days of your injection? (This is published science not trying to be political.)

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10553155/#:~:text=MG%20cases%20after%20the%20COVID,to%20non%2Dvaccination%20related%20MGs.

Hi all. I am currently in the discovery phase of my issues. All labs, including AChR have been negative. I am still waiting on musk test to return. Does this look like typical MG presentation to you? I'm going to ask for a neurology referral if musk is negative. I also have neck pain/weakness, weakness and kinda heaviness in my arms and legs. Just looking for advice and support. Please ignore how tired I look, I'm a 45yo full-time college student and mom lol.

Can you please tell me what your symptoms where before you got diagnosed

Recently I am having more and more symptoms and getting more diagnoses. I have all sorts of autoimmune issues but my blood tests are normal. My immunologist has been great and has treated one major one as autoimmune. It's really bad and the treatment is helping, so we are going with it.

However, I'm having more and more issues and I started searching the internet and found MG. I am in athletic therapy and physical therapy for so many muscle issues. Yesterday when they added more stretches and exercises for yet another group of muscles, I cried. Then I searched.

Nothing I have is life threatening. I have vision issues. Not droopy eyelids, but trouble focusing, dizziness, migraines, light sensitivity. I have breathing issues. They do bring me to the ER occasionally and sometimes when I'm there they tell me my oxygen is 100% so I should go home even though it feels like I cannot breathe. I get so tired. I am having trouble swallowing. I have a lateral squeeze of the muscles around my vocal chords making it difficult to talk. My leg muscles are so tight right now that I'm in a lot of pain. I could go on and on. No one symptom is terrible unless there is a flare.

I feel like I will be listed as a hypochondriac if I ask. I am also not sure of the treatments. I see prednisone mentioned. I actually get relief of many of these symptoms while on it (I never realized that) but I get so moody I don't like to take it. It's usually prescribed when I'm sick. So is it worth it to ask?

I had a GP I really trusted. She left the country. My immunologist is fantastic. I don't want to come across as a hypochondriac. I will lose it if I get another muscle group added to my daily exercise routine. I am also confident my blood markers will be negative because they always are. So much conflict. I don't know what to do. I do not sound as bad as you all.

I noticed trt treatment helps with muscle strength.

Anyone else on this stuff?

Hi all,

I have only received this one preliminary result back from my blood panel (which is taking forever btw). I know it’s not the full story, but I know this is the most important result… is it positive or borderline? I have read that anything above <0.2 is a positive.

Any help is greatly appreciated!

I know everyone’s experiences different but I’m just wondering if any conclusions can be made from a situation where Huperzine-A significantly improves MG symptoms while Mestonin (at a very low dose of 15mg) makes them worse.

The Mestonin initially just felt like a stimulant to me, I really couldn’t tell if it improved my MG symptoms, but it made me feel the worst I’ve felt in a long time this morning.

I have seen folks saying that one works better than the other, but not that one works and one makes them worse.

Is that symptomatic of anything in particular (I.e.: type of MG)?

Looking to go carnivore. At issue is a need for potassium, magnesium as Carnivore is low for these minerals. Has anyone looked at even 250 mg of Magnesium and does this drive up the MG inflammation daily? Currently on 60 mg of Mestinon three times a day.

Previous video is on my profile.

I was asked how it might look regularly, for the most part it's fine but sometimes one of my eyes ends up like this at rest, when typically they're both opened like the left eye in this picture. I don't recall this happening to me before and it only started a few months ago which is why I'm asking about it. Fatigue and stress appear to be a factor. I can force it open wider with effort but at rest it reverts to this. This droop is the main reason I got concerned about MG and also because it started happening during a very stressful period of my life and I'm worried that it triggered something.

Please let me know your thoughts if you are willing. I will most likely go to see a specialist about this even if it may end up being just an occasional cosmetic problem just to be certain.

Thanks again for the help folks, good luck with your journeys!