r/MyastheniaGravis

I am currently at the hospital being treated for Myasthenic crisis and their PT person assaulted me the other day as soon as I asked to sit down, with me screaming for them to get off me, that she was killing me, that she legally had to get off me, and she refused, while she continues to suffocate me with a belt for a long time until I collapsed on the ground, suffocating with a NIF of 20, my voice sounding like Mickey mouse from neuromuscular disease, I had to be wheelchaired back to bed, and neurology almost sent me back to the ICU. I filed a complaint and now the hospital is being vindictive and doing everything they can to go against me.

I don't feel safe here. I told them that I don't feel safe here anymore, and that the assault and corresponding trauma is making me worse. I've been on the ground unable to stand multiple times because of this now, and I have several photos of both me and my vas cath bleeding badly.

They are also telling me I must stay to receive treatments even after I was assaulted and abused or I will be going against medical advice and for obvious reasons, that isn't really an option. They won't clear me to go home or transfer me elsewhere.

I asked to speak to the administration, and they played the same dumb office politics. How do I get them to release me for my own safety?

These people aren't helping me at this point. They are making me worse and they won't do anything about it. What the hell do I do here? I can barely walk at all, but these people are not helping me at this point.

Hi I (27F) have had some double vision, ptosis on one side on and off for years, and recently started having difficulty talking, choking on food or water and the end of the day. I read about MG and on a whim asked my pcp to test my blood for it so I can just know for sure.. well my lab work came back very high for MG antibodies and I’m seeing a neuromuscular specialist tomorrow and I’m really nervous. There’s is not much information online about this disease or what my life will look like now. What should I expect at my appointment tomorrow?

As my other post suggests, I’m still in the diagnosis process. I’m not sure if it’s MG but everything so far is pointing that way.

I’ve been getting progressively weaker over the last few weeks (faster than it’s been happening the last few years) and today I suddenly hit a point where I can’t even sit upright for more than a minute or two before I have to lie down again. my breathing is bad too, I’ve been prescribed an inhaler because no one knows what’s actually wrong but it doesn’t really help much.

Because I’m not diagnosed, I’m scared to go to the hospital out of fear I’ll spend 13 hours (ty Ontario health system) waiting in a seat I can’t lie down in only to be told ‘I don’t know’ and be sent home because apparently they will only test to rule out ‘dangerous’ things.

Should I bother going? Is this considered a mg crisis if that’s what I have? Sorry, I’m stressed and confused right now!

*Update*

So I spent 12 hours in emergency, they said it’s out of their wheelhouse. They’re doing blood tests, but otherwise are sending me home. They think my breathing is manageable, and can’t do anything for the fact that I can’t stand anymore. I am now scared that my inability to walk and my lack of strength won’t go away and I’ll be stuck like this for months. :(

*Edit 2*

Blood tests all normal, they only did the regular tests with the addition of CRP (I have chronically elevated CRP) and said all was normal (besides the one), and gave me advice and a note to my doctor on how to speed up the process of seeing a neurologist. I was then told to use a walker as needed and sent home.

Hi again. I posted a month or so ago about how all my antibody tests were normal. My SFEMG was also normal. My neuro at that point said it looked like I didn't have MG and was going to order an MRI to rule out other things. I asked for a CT scan and sent him pics of my eye with the ice pack test. He saw the pics and said, "Well, that appears to be MG." And ordered a CT scan.

Mind you, he's got years of experience with MG and came highly recommended. Anyway. Just had my CT scan done yesterday and he called me less than 3 hours after the test, saying they found a nodule on my scan and it was inconclusive, but they needed to do another scan. However, from the sound of it, it sounds like a thymoma (It said: There is soft tissue nodularity involving the anterior mediastinum which may be greater than what would be expected for residual normal thymus in this patient demographic for example at the thoracic inlet extending anterior to the right brachial cephalic artery measuring 1.1 x 0.9 cm (7-71). More caudally nodular soft tissue involving the thymus with a subtle area of central low attenuation measures approximately 2.1 x 2.2 cm.)

But is a thymoma usually in multiple nodules? At this point I'm waiting for a follow up CT scan, more testing, etc. But I'm just so glad I pushed to have it done!! And trying not to freak out 😄

I went to another doc to see if they would take me seriously about mg but left very disappointed with all of my health problems being blamed on fibromyalgia. However, he did point out to me that my left eye was lagging behind my right eye when he was having me follow his finger with my eyes. My left eye is the eye that droops and now has Bell’s palsy on. He said that Bell’s palsy wouldn’t cause a true lazy eye like I’m having but didn’t mention anything about mg causing it after he blamed my muscle weakness on fibromyalgia but also in the same appointment said fibromyalgia isn’t a real diagnosis. So anyways he said I need to go to a neuro ophthalmologist. While I wait to get into one of those docs I am curious. Can myasthenia gravis cause a lazy eye?

Currently at the mo I do walking when I can, swim once a week again when I can/feel up to it. That's all my excercise..

I keep reading as we age it's good to have strong muscles, I am in my 40s. How do we build up our muscles without feeling the crash/fatigue and if so where would u start ? I have a really weak core.

Will light weights help ?

Any advice appreciated. Thanks 😁

I am currently at the hospital being treated for myasthenic crisis, and receiving plasma exchange and IVIG to hopefully get me stable enough to go back home. When I first got here, I was not able to go to the restroom for several days, if you know what I mean, and multiple doctors and nurses told me that it was likely gastroparesis caused by the myasthenia, which they said means that the little muscles in my intestines were paralyzed, and if that's the case, the plasma exchange should help with it. Well, a few hours after the third session, my intestines started working again, so, it does seem as though that was the case

I have had very severe symptoms for a long time now, but this is the first time that it has affected my intestines, so it seems to be affecting muscles that have never been affected before.

I have also had issues urinating at times, I mean, I'm 35, so I shouldn't be urinating like an old man, but here we are. They have told me this is potentially weakened muscles, or side effects of the pyridostigmine wearing off.

So, I am wondering if this is something that other people here have experienced, and if so, if anybody has any tips or advice about this?

Hospital neurologist keeps saying he doesn’t think this a MG Flare because it’s mostly his legs (he was walking two weeks ago with walker and now 2 person assist to stand or transfer). He said he thinks it’s a spine issue but we have already had mri to exclude. Primary symptoms leg weakness, double vision, and exhaustion. His blood results at were off the chart so no question he has MG. Not that I agree with the hospital neurologist but anybody have other thoughts of what we could check that might coexist with Mg manifested this way?

Hi! I’ve had myasthenia gravis for almost 3 years and had my thymectomy 2,5 years ago.
I’m on cellcept but I get sick so often! Mostly virus related and not bacterial but still, I’ve been sick about 5 times since the start of 2026 and they usually last 2-3 weeks. I also had shingles one time.
I was at my check up today and they mentioned good’s syndrome, does anyone know anything? I only found some medical papers and they’re hard to read. I got some tests done so I’ll update if I do actually have it. I also read that it has a 70% survival rate for the first 5 years, I’m scared I’m only 20 and I want to build a life but this seems like it’s it for me… help please 🫶
(Good’s syndrome is a immune defect you can get after a thymectomy and can cause infections and hospitalization)

Just a note to be cautious: Mineral water does not have to post on its label what percetage of magnesium it contains. Some are VERY HIGH in content. I found out the hard way when I asked for sparkling water at a ewstaurant and was served a Fench brand of mineral water. In bed too weak to eat for a two days. BE Careful!

I'm Male 27 Y/O, got diagnosed last January 21 with AChR positive MG. CT Scan shows an abnormally large thymus so, the doctors said VATS isn't enough to fully remove all the thymus tissue. I would like to ask for stories or experiences of someone who had the same situation as mine and undergone open sternotomy. Is it worth the risk?

Thank you

To start off, I know that MG is pretty rare so my assumption is gonna always be on the ‘you don’t have it’ side of things. But you know the internet- it loves to throw these things at you when you’re doing research on your issues.

I have been getting progressively weaker over the last 8-10 years now, no matter how much exercise I get. Exercise always makes me waaaaaaay worse off, especially if I push it a bit (and that’s like not even doing a lot in the first place). My legs and arms are mostly affected, after walking a bit my legs feel extremely heavy. Same with arms if I use them too much. I have also found my breathing is getting worse and worse, and lately I’m ‘gasping’ a lot, like I desperately need air. I breathe extremely shallowly, but the doctors don’t care because my blood oxygen is normal. My eyes (particularly my right) droop and are worse after straining myself. I have extreme fatigue all the time and a fair bit of pain. I also seem to have chronic swelling (high repeated CRP) but I was reading that it might be unrelated? I struggle badly with swallowing and choke a lot, and that’s only getting worse.

Anyway that said, I’m not looking for a diagnosis or people telling me ‘you have it’ or not- I am going to see a specialist soon and I want to bring up testing for MG. I have had a horrible experience with doctors shutting me down so I wanted to ask the MG community what their thoughts were on how to go about asking for testing, what tests I should ask for, etc.

Any help would be appreciated.

*Update*

The internal medicine specialist denied my doctor’s request and told her to send me to a neurologist. My breathing has gotten worse over the past few weeks and so I'm being sent to a respiratory specialist, then to a neurologist. I’m more confident now that it’s someone who specializes in this sort of thing!

Thank you all so much for the help so far!! You’re all so nice!

ive had my first IVIG infusion on Saturday, had a minor headache during and was given some Tylenol to help. Did not really touch the headache, but it was easy enough for me to ignore. Up until last night, it was barely 3/10 pain. This morning I kept waking up to 7/10 pain, and it has since gone up to 10/10. Horrible throbbing pain when I move and talk, sounds hurt, light hurts but not as much. I frequently get migraine attacks, but not as bad as this - except for the one time I had beer last summer , which I never did again.

my neurologists office is closed today, so I'm unsure if it's anything to be worried about or if I just wait this out.

Has anyone else had this experience after their first IVIG? brand was gamunex but idk if that's relevant.

I feel the tiniest bit feverish but nothing else is bugging me apart from the pain. edit: took temp and it's nowhere near fever temp

I don't know how to really describe this so I'll give my best go.

Sometimes, I feel like the lower eye lid is curled back or flipped back. When it's not. Like I swear I should be seeing the inside of my lower eye lid when I look in the mirror. Nothing is there.

My left eye is the eye with ptosis. It will tire quickly and vision will get blurry. The sensation of a lid being flipped back can happen on either side, but is primarily on my right side. The right eye is also the eye that likes to twitch. Somedays an annoying amount of time!

I am newly dx seronegative gMG. Mestinon 60mg in 15mg doses x4. I have an appointment with neuro next month. I am curious if this MG-related or just some weirdness.

Since my last crisis in beginning of April I keep getting these episodes of where I have stopped breathing in my sleep. I’m woken up by a racing heart and I can sense that I haven’t been breathing for a period of time, and now my heart is pounding because of the lack of oxygen.

I think this may be due to me ending up on my back.Although on the third time I was on my side/front so I don’t know.

Has anyone else experienced this? All my symptoms are bulbar predominant, so chewing, swallowing & breathing. Seeing the doc about it on Tuesday.

Im really at my wits end of what I should do, I just seem to be getting weaker and weaker everyday to the point where I'm too tired to do anything and live life. Not sure if this is a flare, I've tried searching and coming up with my own conclusions on what's causing this extreme fatigue. I still have the weak arms where I can't lift them above my head and I have trouble with eating and chewing as well as droopy eyelids and double vision.

Hi everyone. I (33F) just got diagnosed with generalised MG after developing weakness as a side effect of beta blockers. I was prescribed them for POTs, after an unexpected flare up of my dysautonomia came out of nowhere and I lost the ability to exercise.

I went back to the doc after i couldn’t keep my eyes open in the evening and then subsequently developed problems/fatigue chewing food even as soft as cake, slurred speech and hoarseness at the end of presentations at work, and my exercise capacity dropped even further - I was having to stop and sit while walking outside because my legs would just get so weak and tired. I also had to take loads of rests while styling my hair or doing makeup.

I got a referral and had some blood tests and nothing came back positive but a neurologist diagnosed me anyway - he suspected the heat and exercise intolerance and shortness of breath that I thought was my pots was MG all along and the Beta blockers made it more obvious/classic in presentation. I’ve LONG had issues with intermittent double vision, issues maintaining a lateral or upwards gaze, and a drooping right side of my mouth that fluctuates a bit from day to day, but never saw anyone about them.

But as my blood tests were negative I’m now reading that it’s very unusual to be diagnosed without any positive testing. No mestinon yet but I stopped the bisoprolol and I feel a little better.

Just wondering if anyone’s had a similar experience. In many ways it explains a lot but also seems a bit out of nowhere and not clear cut like I’d expect. Also my ptosis is really mild compared to examples I’ve seen.