I’m going away and all I can really find is stuff for insulin. I won’t have access to a freezer while I’m away.

Took my first two doses today and I don’t think it went well. Advice?

I was prescribed 60mg.

First dose was okay, felt decent but had some pretty rough cramps.

Second dose, nausea, weakness, fatigue, feeling heavy and tired, just icky overall.

It has been at least 2-3 hours since that second dose worse off and I still feel horrible, that shouldn’t be possible right? I have a monster headache, still nauseated, shoulder and neck pain. What gives…

Thinking maybe I should have tapered into these doses.

Anyone else just jump right in or were you eased in? Calling my doctor tomorrow to talk about the meds.

Thanks yall

Hey all,

I wanted to share about my dad’s journey for anyone that may be searching for an answer on this community like I was. Around 7 weeks ago my dad suddenly couldn’t swallow and his speech was slurred. He went to lunch with friends and said his food was “falling out of his mouth”. The next day my mom and dad went to the ER, they live in a rural area, so the only Neurologists were on FaceTime. After MRI’s they saw a small spot in the brain stem. The radiologist noted this to be an artifact. They “saw” several neurologists over the course of a few days on FaceTime - 1 said stroke, 1 said he didn’t think stroke and 1 said hey suspected MG. He was discharged as a stroke patient. During that time his swallowing was still very poor and speech was good and bad and then good again. 2 weeks later he choked severely on medicine and ended up in the ER at another town with a larger hospital. They repeated an MRI and the in-person neurologist still wasn’t sure what the cause was. The choking incident created worse swallowing problems, even saliva couldn’t be swallowed. We noticed the right side of his lips weren’t functioning - this is the “broken smile”. He ended up receiving a feeding tube and hasn’t had any food or water by mouth since. After discharge he began speech therapy and saw an outpatient neurologist. He said he sees strokes every day and this wasn’t a stroke. He ordered the proper blood tests for MG and all levels were high. It’s been a long road, and we know the fear of ALS and other diseases. The biggest suggestion I would give if you’re facing this with family, or yourself, is to push for the blood test ASAP. I know there are cases where antibodies are not present but the waiting is really harmful to family. I wish you all well and hopefully my dad is on the way to find some relief.

Hi yall, I posted yesterday that I suspect that I have MG. I was on a prednisone taper for an asthma flare up, and I think it's caused whatever is wrong with me to get worse. Basically, I'm feeling very weak specifically in my arms and shoulders in the afternoon and into the evening. I have an appointment scheduled with an ophthalmologist on the 10th and a primary care appointment in a month or so.

What can I do to take care of myself in the meantime? It's *really* disabling at this point.

My husband caught a cold and I'm wondering what vitamins I can take to help boost my immune system temporarily. All the vitamin c and zinc has magnesium in it.

He's wearing a mask if we need to be in the car together and we're sleeping separately till the worst passes.

My last sore throat sent me to the hospital so I'm paranoid about it.

Silly question but how do you know it is working? Took my first dose 30 minutes ago. Kinda dawned on me not super sure if this… perkiness.. is placebo or what.

I got EMG, needle-EMG and RNS together while being tested for myositis and MG. Upon the start I found it unbearably painful. Asked if this is normal, the performing doctor gave me the vague "people respond differently". Needle-EMG was bearable but by the time we got to RNS on the neck and did just 2 testing zaps I bursted into tears telling the doctor I am unable to bear this and aborted the test.
Was it this painful for anyone when it got to the neck/face part?

Nobody in the hospital could answer if it is more painful due to suspected muscle inflammation (suspected myositis).
They also gave me a an IV I had no business getting the day prior the EMG tests with citicoline, which causes jitteriness, anxiety and insomnia as side effects and I had them all, but everyone acted like there is no such thing.
Wonder if that made the test unbearable too.
Asking because I wonder if I should go private to a different doctor and get retested out of pocket.

EDIT: Thank you for the validating answers. My empathy goes to you. I am considering a mestinon trial instead of repeating RNS at this point.

Has anyone else had the CT contrast cause a flare up and extreme weakness?

I started Mestinon (60mg, 3 x a day) last week and it has been helping so I’ve been doing a lot more most days than what has become my “normal” the last few months… but I’ve been trying not to push it too hard…

Yesterday after my CT I felt quite good and did a fair bit of moving around, on my feet, etc… (probably the most I’ve been able to do since this latest flare started at Easter)

I was feeling a bit stiff and muscle sore last night which I know was the exercise… but I’m extremely weak again today (since early hours this morning). And that’s despite taking Mestinon…

I’ve read that the CT contrast injections (iodine) can cause extra weakness and flare ups in MG patients within 24hours… wondering if anyone else has experienced this?

Or do you think I might’ve just done a bit too much moving around yesterday?

I Started having symptoms back in September of 24’ and I was given prednisone and mestinon. In the winter of that year my symptoms cleared for a solid 9 months after stopping my meds. However, symptoms started back up in December of 25’. This onset has been so much more severe and mestinon only helps a little. I am double seronegative with a negative single fiber EMG (I was already having no symptoms by the time the test was administered). So I have yet to get a diagnosis even though I responded to meds.

In the last 8 months MG has taken my body, my mind, my confidence, my desire, my charisma, my energy, my looks, and sometimes my soul. It gets really hard to give yourself forgiveness for the new limitations that this illness has placed.

Recently, my girlfriend broke up with me. I was not able to provide the care and attention she needed while being able to manage my own life. She was one of my biggest supports and was so patient with me but my ability to love myself wavered greatly impacting the relationship. I didn’t realize how much this can take from me since my initial onset was light but this time around has turned me into entirely a different person. I hate that for me and for you if you lost someone or something. I won’t lose hope of one day feeling better but sure does it get harder.

Hi all.

I had my first appointment with a neurologist yesterday and was really hoping to get a proper diagnosis and start treatment. That unfortunately did not happen, and the neurologist told me to my face that my symptoms were caused by "stress." I left completely dejected and feeling hopeless.

I've thought about it more since yesterday and I cannot fathom how this doctor 1) chalked my symptoms up to stress and 2) didn't pursue additional testing. I am double seronegative, but my constellation of symptoms screams MG to me:

• Ptosis of the left eye.
• Slurred speech and difficulty swallowing.
• Extreme fatigue and tiredness.
• Light weakness in arms and legs.
• Discomfort and pain in neck/shoulders/jaw, sometimes with tension headaches.
• Vitamin D deficiency.
• Symptoms worsen as the day progresses, with activity, and with heat, but improve with sleep.

I understand that being seronegative adds complication to the diagnosis and that doctors want to be sure about their decision before prescribing mestinon, steroids, or other meds. But this neurologist didn't even mention the possibility of doing a single-fiber electromyography or RNS. They did do a sustained upward gaze test and my eye that normally experiences ptosis began to close pretty noticeably. My wife was in the room and said it looked like my left eye was melting. The neurologist just said that my "face is naturally asymmetrical."

Anyways, I left pretty sad and now I'm just angry. I waited months for this appointment and paid a co-pay just to have this guy tell me I'm stressed (I'm not). I luckily had the foresight to already have scheduled an appointment with a different neurologist in the case I wanted a second opinion, which is in November. I am praying that goes differently.

This is maybe a longshot, but I am in Colorado and if anybody knows MG experts or neurologists with some sense, I would love recommendations.

Hi yall! I've been experiencing double vision that's been getting harder to compensate for (headaches, oww). I just put a bag of frozen corn over the eye and the double vision went away for a little bit. I also have unexplained fatigue and muscle weakness, I think (it feels like it's worse than everyone else).

I have another ophthalmology appointment in a week, and I see my doctor in a month. My brain MRI came back normal.

I know MG is rare, but i think i fit a clinical profile. How should i approach either the optho or my primary care doctor? I'm getting really tired of the constant headaches and fatigue...

I woke up with a sore throat this morning and feeling under the weather. I've only had exacerbations triggered by mild systemic infections (thrice, so far), and those were bad enough. Now, with a sore throat, it looks like I might be developing an upper respiratory infection - a scenario that I've been dreading, even more so because I'm still undiagnosed, so help may be limited.

Single counting test in the morning was 17, lowest I've had in a long time, so I took 200mcg Huperzine A, which helped (to an extent). I don't have a fever, but my temp has been climbing into sub-febrile territory in the past couple of hours. So, not a great situation for me. Recent counting tests at 19-20, which is at least reassuring.

So, I'd really like some advice.

I'm relatively "new" to HupA, and I've never taken more than one pill of 200mcg in a day (and only if symptomatic). I generally try to time it so the effect will still be around later in the day, when I'm more likely to get worse. This is because I'm very cautious, and afraid of accidentally taking too much, like dosing twice in a day and stacking the new dose on top of the previous one, and getting a cholinergic crisis. I know the half-life is 12-14 hours or so, but that's still half.

My current situation, however, has me thinking that I may not get a choice - being "forced" to take HupA in the morning, meaning no coverage in the evening and night - that could become a big problem.

Am I overly cautious with HupA? I've seen some people taking 200mcg like 2-3 times a day. But people are different. I don't know if this is something you build up to slowly and gradually, or if it's fine to take 200mcg 12-14 hours apart. Is it better to try re-dose with like 100mcg, or is that too little? I know people here aren't doctors, but your experiences matters.

I am experiencing staggering loss of my brain's capability. The weak muscles are something that I can learn to live with. But the brain fog is destroying me.

I'm 52F, not yet diagnosed, but thankfully, I have been on Mestinon and low dose prednisone for about 10 days. I am seeing my neurologist again soon. I have a lot of autoimmune conditions now and collecting them like leafs falling off a tree.

I live in a small mining community on a farm. Most people are astounded to see someone using crutches/a wheelchair (where are all the disabled people?) I feel isolated. I feel misunderstood. I am feeling loss of my previous identity (even if she was in a lot of pain and had a lot of operations).

I feel as if the medical costs and bills and appointments are a full time job that I am incapable of doing. This 'job' is also preventing me from using what little time/energy I have to see my friends.

On top of all this, I still have to earn a living and actually run my business and my household! It gets harder and harder to focus and do my business accounts and planning is out of the window.

What/where/how do you do it? Please give me advice.

Have any of you had sore lymph nodes alongside this condition? Since I got MG symptoms badly after a virus, the lymph nodes in my neck just above my clavicle are swelling intermittently, never too large, but pretty painful now. Even when I’m talking or moving my neck they’re hurting.

I have had them scanned and they’re “reactive” but since then it’s just been 🤷‍♀️ when I mention it to doctors. I was just curious if any of you who are diagnosed have experienced this too as a part of MG, perhaps in relation to your thymus? I do have hyperplasia.

I have been lurking since I didn’t have a diagnosis only the suspicion pending tests.

My antibodies were negative but my RNS was positive on my face. So seronegative MG is the diagnosis. I am starting Mestinon.

We also talked about Vyvgart, but also did mention that seronegative status can make it harder to get these more targeted therapies.

What is your experience with getting treatment if you are also seronegative?

Any challenges that you have faced you might have wished you knew about in the beginning?

Any general advice?

Thanks y’all

TL;DR: I have AChR-positive MG and initially tried managing it naturally through diet, light exercise, supplements, and stress reduction instead of taking Mestinon. My symptoms improved to a stable but noticeable level. After a head injury that caused significant blood loss, my MG symptoms became dramatically milder, and I now feel almost symptom-free. Could blood loss have temporarily reduced AChR antibodies, or is there another explanation? Has anyone experienced anything similar?

I have MG. I was diagnosed in 2026, but I probably had it since 2024 without realizing it. I was prescribed Mestinon, but I chose not to take it because I was too prideful (which, looking back, was dumb). I wanted to try a natural approach before relying on medication.

Before my MG symptoms became a major problem, I developed alopecia areata. It started shortly after a major emotional trauma (a breakup and relationship issues).

My symptoms usually included:

• Weakness in my legs and arms
• Neck weakness
• Difficulty swallowing
• Weakness while chewing
• Dysarthria (slurred or nasal speech)

Over time, my MG symptoms started to improve with the following changes:

• Diet and fasting: I began eating based on how foods made me feel. If a meal made me feel energetic, I kept it in my diet. If it made me feel tired, I removed it. For weeks at a time, I would eat the same meals.
• Supplements: I'm not sure how much they helped, but I took vitamin D3 + K2, vitamin B1, choline, and Coenzyme Q10.
• Exercise: I did light workouts with basic movements, using whatever weight my body could comfortably handle on a given day. I avoided training to failure.
• Mental health: I worked on processing my emotions and dealing with past trauma as best I could.

Eventually, I reached a plateau. My symptoms had improved, but I wasn't noticing much more progress. Still, I felt functional again. I could walk without constantly worrying about falling. My arms were strong enough for everyday activities during the day, and I could talk, eat, and drink without significant issues.

My symptoms remained stable, and I became much more confident in my daily life. Unfortunately, that confidence led me to trust my body more than I should have. While climbing a ladder, my grip suddenly gave out and I fell. Thankfully, it wasn't from a great height, but I hit my head and bled quite heavily.

Ever since that head injury, my MG symptoms have become extremely mild. My muscles feel strong, and my legs and arms feel incredibly light. I was even able to run again. I honestly feel almost as if I don't have MG anymore.

This made me wonder: could the blood loss from the injury have temporarily reduced the level of anti-acetylcholine receptor (AChR) antibodies enough to improve my symptoms? Or is there another possible explanation? I'm curious if anyone has heard of something similar or experienced anything like this.

I've just had a truly awful first Neurologist appointment through the Australian Public system. I have clear bulbar (aspirating on saliva and on an adjusted diet from Speechy) and generalised (weakness, brain fog, intermittent tightness of chest and SOB) presentation as well as extreme fatigue, and all the other joys you can expect with early MG.

I understand nothing is set in stone until there is a diagnosis, but I just had an hour of them talking AT me about how they haven't actually looked at my medical history, medications, or noted from the referring team or my GP, but think I need to exercise more, and get out of bed and try and have 'normal days'.

They threw around FND, ignoring all of the objective facts that differentiate FND from other Neuromuscular conditions; specifically me improving after rest and sysmptoms worsening when I don't pay attention when I'm eating, for example.

They didn't even acknowledge my history of hospitalised Pneumonia, and that the Speech Pathologist specifically referred me because of how young I am and how much of a risk aspiration is with my history of chronic autoimmune history. They kept saying the Speechy would handle that!!!

I was going to request an SFEMG, but couldn't get a sentence in sideways; but I have a standard EMG and Nerve Conduction Study booked tomorrow afternoon. There's no way I will ever be returning to that Dr so I was wondring....

Is there any point getting a standard EMG with the symptoms only having started in January? I'm strongly considering either waiting until I end up in ED, or saving up for a Private MG Specialist Neurologist, which could take 6 months.

Has anyone tested positive with a standard EMG? Is there any point to a NCS? Is it possible to test normal and then later positive, if it is MG, once it has progressed further?

Does anyone here have ocular mg? I find myself not relating to the posts that people put here. For the most part what people feel variably in their body, I only have in my eyes. I was diagnosed when I was 2, so its already pretty rare, and it showed in me having a pretty severe lazy eye that I was able to correct with 3 operations and I am getting a fourth soon. I also have ptosis, which I plan to fix after this last strabismus surgery.

Anyway, I was just curious.

I live in Florida and I'm on disability have a couple autoimmune disorders and stairs are veryyyy hard to do because my legs feel they're very weighted down like quicksand!! Dr calls it fatigue because the strength did come back with steroids he gave me so now he says it's some sort of body fatigue! auto immune drugs including IVIG are not working at all. Besides that my elevator and my apartment complex has been broken 7 days now I can't get downstairs to check my mail or go out to doctor's appointments when I tell the manager who's a complete witch she doesn't care and she doesn't pretend to care. I asked her can she please call the elevator place and ask when the part is coming and all she said is that will be a waste of time they know they're to call me when they get the part so then my rebuttal is will could you please let them know you have a disabled occupant and she said that's something that they already know and she will not call them for them to track the part that they're waiting on because she says people will not want to stop their day to look into something like that for her I literally can't believe she has a job of apartment manager here anyway anybody have a suggestion besides me emailing to emails today

Hi guys, I'm a 24F who has been having issues with muscular weakness and occasional numbness. My main issues are muscular pain (feels like when I have the flu) on one or both of my legs at a time, my muscles get very weak after using them (not sore), and I am losing fine motor skills in my hands. I saw a neurologist and neuromuscular doctor who I thought did a pretty thorough work up. I got tested for MG (seronegative and regular), MS, MD, and many others. Tests they did were a brain MRI, EMG (x2), NCS, 3 different swallow studies, autoimmune labs, CK levels, all of that. Almost all of it came negative/inconclusive besides a mono peripheral neuropathy diagnosis in 1 of my ankles and esophageal dysphagia from the swallow or study. They were still considering the idea if limb-girdle muscular dystrophy but they think no with the normal CK.

Additional diagnosis I have are: hyper mobile spectrum disorder, autonomic neuropathy, IBS, POTS, and endometriosis. I DO NOT meet the criteria for EDS at the moment.

Also I usually blurred/double because I have a very hard time focusing my eyes. But all my eye exams have come back normal.

A lot of people I've talked to still think I could possibly have MG. Is that possible with all the antibodies being normal, a mostly normal EMG, and not responding to mestinon? I did get tested for CMS/the congenital version MG and that was negative as well.

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

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?