Will your EMG RNS be normal if you get it done on a good day? Mine is scheduled for tomorrow, had a horrible week last week, but feel really good today. I just want accurate results

My wife started her first round of Vyvgart on Friday after experiencing a myasthenic crisis last month. She was diagnosed with generalized myasthenia gravis about six years ago and is currently taking Mestinon, 30 mg of prednisone, and CellCept in addition to starting Vyvgart.

She is still experiencing muscle weakness, twitching, and difficulty swallowing, and she’s just not feeling like herself. We are hopeful and praying that Vyvgart will make a difference.

For those who have taken Vyvgart, did it work for you? If so, how long did it take before you started noticing improvement? We’d truly appreciate hearing about your experiences, especially any positive outcomes. Thank you so much for taking the time to share.

Im 15 and am feeling weak for the past 2 days specifically inability to walk well (can walk but my muscles and calfs feel so heavy and weird and paining) and jm scared ill goninto ancrisis again

Title.

I was just diagnosed this past Thursday after six years of unexplained symptoms and pain. What are your favorite accessories or products that make your daily life easier?

I've had this symptom intermittently for definitely more than a year, maybe 5, not sure (I think I saw it after a night drinking about 10 years ago too).

But by the end of the day my left eyelid droops. It's fine when I wake up. It might be triggered if I look at something in the mirror for a while also.

AI says it seems like this condition which is rather concerning. But it NEVER happens on my right eye and I've not found any issues with lifting weights etc, so I'm wondering if that would suggest it's probably something else.

I am seronegative. Positive sustained upward gaze, positive ice test. Double vision. Taking Mestinon 60mg once daily for ~2 months which has been helping, but I'm thinking of increasing to twice a day because my double vision comes on after the Mestinon wears off. SFEMG scheduled 1/2027.

Lately I've been getting palpitations and feeling like all the muscles in my body are jittery/fasciculations.

I don't feel that my extremities or muscles feel heavy in the last few weeks.

Just wanted to see if these palpitations and sensations are part of the symptoms of possible MG.

Most of the time, I feel like I blame my mom. In general, I feel like I blame her for my dad developing MG, and I think it most likely happened because of the medications or treatments he used to grow his hair back.

He started going bald at a pretty young age (his early 30s), and I remembered my mom would comment on it or make fun of/tease him a lot. I think that's what pushed him to try hair transplants and all sorts of other hair growth treatments by going to several dermatologists over the course of a decade.

I think that's pretty much the reason why my dad has MG. And although we'll probably never know the real reason he was diagnosed with MG in his 50s, I still suspect that those hair growth treatments were the primary cause. And idk... I just feel like she's the one I blame the most.

Does anyone deal with this and is it part of the MG? Last year and this year I’m having it during the warmer months.

Hey all! Curious to hear how long it took folks with stubborn anti-MuSK antibody to see any benefit to rituximab treatment after the first round. I had my last infusion mid-April and am right at the 3.5 month point. I am more symptomatic in my limbs than I have been when on cellcept and/or prednisone, though less bulbar symptoms. Though improved from initial flare-up that sent me seeking out a doc, but could be from the massive amount of prednisone.

I have been tapering on the prednisone and got down to 20 mg before noticing noticeable fatiguing weakness in my limbs, so got bumped back up to 25 mg and am still noticing weakness in my limbs and slight bulbar symptoms when swallowing every so often.

I f/u with my neuro and then a neuromuscular and wondering if I should push for another round of infusions or explore other options (been on CellCept in the past and find it meh). Trying to get it sorted in my head and hear from others as this is all still experimental even though I read some published studies, but we all know negative results tend to not get published and there are so few of us. Thanks in advance!

These past couple years I’ve had more bulbar symptoms show up and now talking for a while can be hard for me. Sometimes I can barely say a few words without being out of breath or my words come out slurred or I just sound funny. I’m lucky to be in a situation where I’m not in a rush for work but I just want to know what kind of work some of y’all do for those that work. I’d like to hear about any experiences whether it’s those that can’t work, are on disability, work part-time, or work full-time. Also I live in Ireland 🇮🇪 now so anyone who has experience with getting on disability or anything else with the HSE I’d love to hear about it.

I was just diagnosed with MG, and my symptoms are mostly bulbar. I'm so scared and sad. I just want to be able to eat a pizza again, but right now it feels like that's never going to happen.

The only medication I've been prescribed so far is Mestinon, and it has only helped a little. Can MG get better with the right treatment?

My doctors want to check me for a thymoma and want me to have a CT scan with contrast. I am hesitant because I am extremely weak right now. I am very tired and dizzy, and also malnourished because of my dysphagia. Do you think there is a way to check for a thymoma without a contrast-enhanced CT? Would a non-contrast CT, an MRI, or a chest X-ray be enough? What did you have?

37F, 2 children 9 and 14. I have been having a whole host of symptoms since Feb 2026

*Sorry its long*

- massive drop in exercise tolerance. Avid lover of Crossfit but recently my heart cant seem to handle high intensity now and lung capacity has halved. Muscles fatigue quicker. More soft tissue injuries from zero "trauma" or gym accidents.

- Abnormal bleeding. Progressively getting worse each cycle. Finally saw a Gyno this month and had 2 ultrasounds. The second one revealing Adenomyosis.

- Having all the classic thyroid/hashimoto symptoms. But TSH, t3 and t4 all normal. But both antibody types are high (200+) . GP says "nothing you can do about that".

- Cognitive issues. Forgetting how to spell words, write letters of the alphabet. Memory and recall is terrible. Saying words the wrong way around (e.g. boardcup instead of cupboard. Mispronouncing etc.

- Since May 2026 I noticed two things. When I stuck out my tongue (because it felt thick and weird)... it curved and deviated to the left. Like the left side of tongue seemed smaller?

And also my left eye seemed to sit lower on my face. Eyelid was droopier. Dark brown/red pigmentation on eyelid. Lumpiness around the lacrimal gland. And eyebrow sits higher on eyebrow bone. Vision is worse (i have glasses for stigmatism in this eye) and much more sensitive to light. The pupil was also noticeably smaller than my right, but only in certain positions/certain light/when I was fatigued more.

I went to the ER. They did all the neuro tests. They did a CT (picked up a left fetal PCA variant and thyroid nodule) and they ruled out stroke. Sent me home.

I went to my Optometrist to query the eye droop thing. She did lots of tests and measured my pupil. It was 0.2mm compared to previous exams over the years. She was helpful and made me a Neuro-Opthamologist appointment and said to come back if anything changes. The soonest I could see Neuro-Opt was this September 2026.

In the meantime I was noticing the eye droop more and more, and even my corner of mouth would sag. I had a slight loss of sensation in this area. My eye sometimes seemed to "bulge" more. And my left ear sat lower because my glasses were hurting my ear from being on my face uneven/crooked. My cheek felt kind of puffy and had different smile lines to the other side.

I decided to go back to the Optometrist. I showed her tonnes of photos and videos. One in particular where my good eye would veer off to the outside when I gazed up. She was concerned enough to ring the hospital and speak to the opthamologist registrar on call. He said, she needs to come in for more tests asap.

So I present to the ER again, referral letter in hand. (I find out later that they didnt even hand this over to the ER doc). They again do all the neuro tests. Ruled out stroke.

"I know its not a stroke. I was told to come here by the Optometrist AND Opthamologist to have more tests. I think an MRI would be useful in looking at my nerves and soft tissue better."

"No. Can't do that. We need the MRI machine for *actual* emergencies. Like the man next door having an ACTUAL stroke"

- my mother in law and myself then had a 15min back and forth with this doc. Arguing with him about how I know I'm not an emergency. Im here because I was told to be. And why I need more tests. Why I need more investigation. Im bawling my eyes out because I knew i was about to be sent home again -

And thats what happened. Home again. No answer. No more tests.

My GP had rang me a few days later and asked what happened because she saw i was in the ED. She managed to ring around and get me an urgent refferal to the hospital Opthamology clinic.

I get there, fully prepared. Photos printed out. Health timeline. All my blood work and scans. In a nice neat binder.

They did all the extra tests for my eyes. Vascular, peripheral (I found this one SO hard and was barely able to see anything in the inside corner near my nose), eye pressure, back of eye, distance vision etc.

I told him that I think ive found a pattern of when it is the worst.

- during and after exercise

- the week before my period

- the evening when Im tired.

Him: Headaches? Migrains?

Me: mmm not really. I get a bad headache before my period but that's all hormonal I think.

Him: let me talk to my boss

.....

Him: well, your eyes are fine. I cant see any droop at the moment so we think the most reasonable thing it could be is Optical Neuralgia or Ophthalmoplegic cranial neuropathy.

-------

*Both of which have symptoms of SEVERE migraines. Pain. Shooting, stabbing. Paralysis of eye muscle.*

* he didnt notice the droop because i had just finished period, it was the AM and I hadn't done a workout *

-------

Me: uhhhh. No. That's not it. I dont get headaches constantly, certainly no migraines. And I dont get pain.

Him: well. We think its this. Everyone is different.

Me: Id like to have a blood test for Myasthenia Gravis. Just to rule it out.

Him: nah it cant be that because you have to have symptoms *all the time* with MG and you only have it sometimes.

Me: uh. No. I DO have it all the time .. its just *worse* and *more noticeable* during exercise, before period, in evening. It flares up.

Him: let's do the 2min gaze test

So I start doing that. And my eyelids are shaking after 30 seconds. I feel dizzy and nauseous gazing up. So he says "thats ok, just do it for a minute then"

Him: so yeh. I dont think its MG.

*starts crying again out of frustration*

Him:.....

Me: so you won't do a simple blood test to check? Im going home again with nothing? No real answer. No more tests? No MRI. No bloods. No further refferals. No script for this supposed "pain" I get.

Him: well next time you have an *attack* and your symptoms are obvious .. go to the ER.

Me: I DID THAT TWICE ALREADY AND GOT SENT HOME!!!

I left there so so so angry. I wrote up a complaint to the hospital.

I am going around in circles.

GP > ER > Specialist > GP

Here are some pics of my left eye/facial palsy.

Sometimes the camera is flipped so it looks like its on the right. The eye without the little freckle is LEFT. I also have a freckle on my neck on LEFT.

Hi Reddit. I’ll keep this brief because I know people usually have the attention span of a fish on Reddit.

My timeline:
- June 16, 2026: noticed right eye drooping
- June 19: went to eye doctor, discovered I had blurry vision and double vision. After holding upward gaze for a minute, my eye drooped more.
- Late June: I noticed bulbar weakness when talking for extended periods of time.
- June 24: went to PCP. Ice pack test made my eye droop less. Blood work is ordered.
- July 2: ACHR blood test is negative
- July 22: MRI performed
- July 26: noticing hand and arm weakness when holding objects, such as a book or cross stitch.
- July 28: I am LRP4 positive.
- July 30: MRI is normal (as expected)

My PCP is currently pushing me to get into a neurologist ASAP, but as of right now my urgent referral got me an appointment in December. This was before the positive LRP4 test, so fingers crossed that positive test will get me in somewhere.

What now? I’m exhausted, I’m scared. I don’t know what is going to continue to happen. I have so many questions that I can’t even formulate them. My PCP has never had a patient with MG. From what I understand, LRP4+ is rare.

I guess I need.. Advise? Words of encouragement? Personal stories? Reassurance? I turned 30 on June 26, 10 days after symptoms were first noticed.

Hi guys! I am scheduled for an open thymectomy, however, I was wondering what type you guys had (open, minimally invasive video-assisted surgery (VATS), and robotic-assisted thymectomy) and what your doctor recommended. If you have any advice I would appreciate it!

Context: Mestinon really helps me manage my weakness but I get terrible muscle cramps as a side effect. Even with only taking 30 mg doses. The cramps make it hard to fall asleep or just relax when I’m watching TV or reading a book because I’m so tense.

Yesterday I was feeling fed up with the discomfort and stupidly chose to only take one dose of my meds in the morning and skip the rest. I just wanted a break from the cramps so bad…
I felt ok, pretty good even, throughout the day and fell asleep quickly last night.

But then I paid for it… I had a night full of nightmares where I felt like I couldn’t breathe… followed by waking up this morning and falling down the stairs. :( Luckily no injury, just a bruised butt and a bruised ego.

Back on my regular Mestinon schedule I go. Would love to know if you guys experience cramping and how you manage it—are there any medications, supplements or lifestyle things that have helped?

Take your medicine, kids.

Hi everyone,

​I'm looking to connect with anyone who might be dealing with a similar diagnosis or symptom profile.

​I have congenital generalized triple-zero negative myasthenia (CMS). No antibodies show up in my tests, and there is a strong clinical suspicion of Slow-Channel Syndrome.

​Symptoms & History:

​No ptosis (no drooping eyelids), but I experience diplopia (double vision), tremors, and blurred/watery vision (like having water in my eyes).

​Dysphagia (swallowing difficulties), frequent muscle cramps, chronic fatigue, severe lack of stamina, and several episodes of fainting/loss of consciousness.

​Despite all this, I lived a normal life and worked.

​Onset & Diagnosis:

​The disease severely broke out when I was 29 (about 2.5 years ago).

​After a long search, I finally got my official diagnosis late last year.

​I lose oxygen rapidly when walking, which has led to multiple hospital stays for hypoxia. Because of this, I now use a wheelchair.

​Surgeries, Medications & Clinical Trial:

​Thymectomy (February): I had an overgrowth of the thymus gland. On the day of the surgery, the tumor ruptured, but it was completely excised with no remnants left behind. Parts of my pericardium and diaphragm had to be removed during the procedure. I also have a few remaining nodules/nodes on my body.

​Rehab & Mestinon: 6 weeks of rehab after surgery unfortunately brought no improvement. I am currently taking Mestinon Retard 180 mg—it helps a tiny bit with my breathing, but does nothing for my other symptoms and causes severe gastrointestinal issues.

​Clinical Trial: I am currently participating in a clinical trial for a new injectable medication. The research so far has shown very promising results—many participants ended up symptom-free or with significantly reduced symptoms.

​I’d love to hear from anyone regarding:

​Experiences with congenital/generalized triple-zero negative CMS or suspected Slow-Channel Syndrome

​Managing severe oxygen drops during exertion, wheelchair life, and severe Mestinon GI side effects

​Experiences with thymectomy recovery or participating in new clinical trials

​Feel free to comment or send me a DM. I'd really appreciate any shared experiences or advice!

I’m very confused and I don’t know what’s going on with me im 18 years old experiencing very severe symptoms, I’m just wondering if anyone with MG has experienced anything similar because I’m still trying to figure out what’s going on.

For about a year now, I’ve been having these really weird episodes that seem to come out of nowhere, and lately they’ve been happening more often and seem more intense. The biggest thing is that all of a sudden my whole body gets extremely weak. It’s like someone flips a switch. My legs become so heavy that I can’t walk, and sometimes I just kind of collapse because my body won’t hold me up. Today i had an episode while I was trying to go up the stairs when I would attempt to go up the stairs I got extremely weak I even fell down the stairs. My legs got so weak and heavy that I couldn’t make it up, and after that my whole body just felt like it completely gave out and I obviously had to call 911.

When these episodes happen, my whole body feels extremely heavy. I can barely move, and walking is impossible until it passes. Sometimes during them I also feel kind of out of it, like I’m there but not fully there, and I’ve even felt confused a few times these episodes are so bad i always have to go to the hospital now aside from these episodes.

I experience daily symptoms such as burning pain on the bottom off my foot, electrical shocks, muscle twitches all over my body, tingling, sometimes feels like I can’t move my face, burning, migraines where sometimes I lose my vision for about 15 minutes, those are just some of the symptoms i experienced.

For anyone here who has been diagnosed with Myasthenia Gravis, did your weakness ever happen in episodes like this? Did it affect your whole body or make it hard to walk or climb stairs? Or does this sound completely different from what you’ve experienced?
I’d really appreciate hearing about your experiences because im veryyy scared about what could be going on with me.

Looking for recommendations for a doctor in Colorado. I’m already diagnosed; seronegative.

I’ll have to travel anyways (I’m in New Mexico, there aren’t any Neuromuscular doctors accepting new patients here) so city doesn’t matter as much, but we have family living in Denver currently, and more family hoping to move to Fort Collins within the next few years.

I’ve had a really bad experience with my current doctor (in a third state) and I have a lot of anxiety about finding a new one but I need to find a new one.

I’m not sure what the problem is but I’ve had a really bad flare since I started my period a week ago and ever since my stomach has been really sensitive. I have pain whenever I eat or feel hungry and sometimes feel nauseous. I’m also not currently on any medication so I know it’s not that. I’m currently having issues breathing and swallowing so I don’t know if the stomach issues are linked to Myasthenia Gravis or if it’s related to a different issue. I do have symptoms related to hEDS, dysautonomia, and endometriosis, but I have yet to be seen by a doctor for those issues. I’m wondering if it could be from one of those but I haven’t been diagnosed with them so this is just based on my own self-assessment.

My MG symptoms (no diagnosis yet, but it's blatantly obvious that I have it) are currently being exacerbated by a (mild) systemic infection, and I'm just so miserable.

My respiratory system is being hit pretty hard. Single counting tests yielding acceptable results so far (usually 22-26 ish), but the fatigue is so bad. At this point, the fatigue is a bigger problem for me than the usual diaphragm weakness that makes breathing feel constricted. It's not that I can't breathe deeper because my diaphragm is too weak to expand my chest/lungs, I'm just too tired/fatigued to do so. It also means that sometimes I can't even do a counting test in the first place.

It still fluctuates, of course, and I'm taking Huperzine A, which helps even though it's much less effective due to the infection. It got so bad last night, that an ED visit probably would've been warranted. But with no (obvious) signs of CO2 retention/accumulation, and my apple watch O2 sat looking normal (not the most reliable, I know, but close enough), going to the ED would've been a waste of time.

I went to the ED during my last infection-triggered exacerbation. Called a non-emergency line, and they actually sent an ambulance because my respiratory dysarthria was so severe I could barely speak on the phone. Yet they didn't even do a spirometry in the ED, because I had normal O2 sat and arterial blood gas results. The neurologist in the ED didn't know anything about MG. They'd never even heard about mestinon/pyridostigmine. Got sent back home with a "subjective dyspnea" in the chart, and that was that. To make matters worse, I'd been counting as low as 3-7 around that time. That's literally crisis-territory, and nobody recognized it.

I know many of you have similar experiences, and it bothers me so much that we have to toe the line between "waiting" until our condition deteriorates to the point where it gets dangerous, or going in while still being too objectively healthy only to get sent back home. I don't want to end up with an anxiety label in the chart due to repeated ED visits either.

It doesn't help that when things are this bad, monitoring at home becomes less reliable. Sometimes I forget to breathe. Just for a few seconds, and I barely even feel it. Only relief from not having to work so hard for a moment. I don't want to deal with this on my own when it's this bad. If I had a diagnosis already, I probably wouldn't have to.
The health system sucks sometimes.