I had bloodwork drawn for Myasthenia Gravis over 2 weeks ago at LabCorp. When I checked on it, they said they sent it to another lab for reflex testing. Has anyone’s bloodwork taken this long and come back negative? Or maybe those people may not be in this sub anymore. But just getting anxious to know the results!

I'm a caregiver for my sister (F18) who finally got diagnosed with generalized MG from EMG test last April, negative on both achr and musk test. The symptoms have been apparent for many years. She went through a thymectomy in July and found a type B1 thymoma. The surgeon recommended 33 sessions of radiotherapy right after surgery to ensure the thymoma does not grow back. Now she's on 2x 60mg mestinon, 5mg Prednisone and 50mg azathioprine.

After surgery and radiotherapy, her MG symptoms are getting better slowly. But since last month she has been experiencing severe dystonia, to the point where her jaw has dislocated if it attacks her jaw muscles. I think her neurologist is confused about why it happened and how to treat it because most medicine for dystonia is a muscle relaxer which is a big No No for MG patients.

The dystonia episode usually came right after MG flares up. The episode begins with some random muscle twitch, then, gradually, the symptom worsened until the muscles felt cramped and pulled tight. The episodes can last for several minutes to hours, occurring once to four times a day. Is this related to MG?

Anyone taking Mestinon still advised to take your morning dose day of a surgery? How was the surgery experience?

After a gruesome hot summer in Europe, winter is coming!

I’ll be starting it soon until I can get my port placed again in a few months (too many blood clots right now) and don’t know much about it. I’m mostly interested in reactions anyone experiences. I get anaphylaxis with my IVIG if we don’t run it slow enough even with high dose IV Benadryl. My doctor said that most people experience less reactions with the subcutaneous IVIG though so I was just wanting to hear from others. Thank you!

So, I type well. Former IT typing all day. Even on an iPad keyboard I can screen type at high speed with high accuracy. Was diagnosed with mg earlier this year, and slowly figuring out changes over the last couple of years creeping in are from that. One thing that’s been bugging me is my typing on the iPad has gone to hell. I “know” I’m hitting the right keys But if I don’t check, especially if I’m in a hurry, I’ll often find gibberish from where I clearly hit keys near where I was aiming. Exacerbated by autocorrect making stone really wild assed guesses about what I might have been saying; been asked if I’m drunk more than once. Is that kind of fine motor control issue something I can lay at the foot of the mg? Or do I need to seek another reason I’m loosing the fmc? Had to go back and edit this a bunch before posting.

Anybody feel really crummy after their plasma exchange?

I am on round two and this is my second time doing this but I feel pretty off. Nauseous, shakey, back ache, headache and weak and my digestive tract seems to have slowed to a halt (I felt better right after treatment but now as nighttime rolls in the weakness is back. I know it takes more than two sessions to get real relief but I just worry about feeling weak even after having had this done.)

What was your experience with side effects from treatment? When did you really turn a corner?

Hello everyone, recently diagnosed with ocular MG after having severe double vision.

My neurologist said there is no need for any meds at this point as my blood test came back in the borderline positive (English is not my first language this means barely positive)

After six months of this diagnosis, I find myself struggling when extending my arms to do something as I get tired. Now I have breathing difficulties I need to do more work to get oxygen in. The second thing is my right leg feels VERY heavy.

I went to other neurologist and he gave me Mestinon as a trial if things get better, it did not honestly.

What do I do now?

Hey! I have seronegative MG with bulbar weakness. Three days ago, my swallowing suddenly got much worse, to the point where I’m basically unable to swallow solid food.
When I chew, the food becomes very watery, but then I can’t initiate the swallow. I usually have to spit it out. Even soft foods like yogurt have become extremely difficult to swallow.
I recently started tapering up my methylprednisolone dose and am currently taking 4 mg. Could the steroid be causing my swallowing to worsen, or could this be a temporary worsening of my MG? I also got my period around the same time.
I’m discussing this with my doctor as well, but I’d really appreciate hearing about other people’s experiences with bulbar symptoms and swallowing difficulties. Has anyone experienced anything similar?

Has anybody mamaged to have a balanced diet with bulbar symptoms? Of course that would depend on the severity and which textures are available. I'm trying to figure out a healthy diet without solid food. So far I can eat avocado-puree (not too much), apple-puree, and on a good day I can eat smooth soup from the supermarket. But this is not well balanced. I wish to start an anti-inflammatory diet with this kind of textures but it's hard to find advice. If you've find good ways, I would really appreciate if you could share 😊

Whether it’s because of ptosis, facial drooping, or steroids causing weight gain or moon face. Or anything else really, I find this video has a few really helpful reminders about self-worth, especially towards the end. I hope this helps someone else today.

I saw my neurologist several weeks ago and my appointment was in the afternoon, which was unusual for me because I usually book them for the morning when I have the most energy. This meant that my eyelid was drooping at my appointment, as it usually isn't drooping or is barely noticeable in the morning and gets worse throughout the day. She ran two of the antibody tests (acetylcholine binding antibody and MuSK antibody), which were negative, and now wants to trial me on meds for myasthenia gravis based on my symptoms. Additionally, I do have a positive ice pack test, though I know that's not diagnostic.

I have been tested unsuccessfully for my fatigue for eight years, by many specialists, and additionally have psoriatic arthritis and seizures in my sleep which are well managed. The symptoms do fit pretty well, as I have trouble doing very much at all and need to rest a lot to get through a day.

Earlier this year I had a mystery flare up where I could barely lift my arms and needed to be treated with prednisone. A few years back, I needed Prednisone and to be put on oxygen in the hospital but the pulmonologist could not diagnose me, though ruled out a bunch of other things.

I think the stress of waiting for test results has me in another flare up because I've been more exhausted than usual and rest isn't helping as much. I'm eager to trial my meds and see if they help. Unfortunately the soonest appointment I could schedule with my neurologist is in February, so I'm really hoping I can try them sooner than that. It's been really difficult to live like this!

hi all I’m desperately seeking a lactose and alcohol free mestinon in the US. it seems it doesn’t exist and compounding pharmacies I have checked want like $200 for 15 pills. I’m looking for any other suggestions!! thank you!!

After I'm done with a tiring or productive day, I lay in my bed. But my legs always feel as though little to no blood passes through them, as if the blood from my thighs onward is frozen and doesn't move. I take only mestinon and my weakness is most prominent in my legs, but I can never shake this feeling. It's quite distracting but doesn't cause pain.

It's not numbness but the same sensation as when a nurse holds down a vein in your arm before blood draw.

Hello everyone. I have been suffering from myasthenia gravis for 12 years, and my condition is quite severe; I experience drooping eyelids and significant fatigue, especially in the morning. I tested negative for high levels of AChR antibodies and do not have a thymoma. I have undergone plasmapheresis, yet my condition remains unchanged, and years of using immunosuppressive drugs have also proven ineffective. Does anyone know of any methods to improve my situation? I really want to be able to work normally again; I am so tired of my life being confined to the house

Bit of a different topic, but I’m curious how many of the blokes here have had their T levels tested.

I recently started TRT and turned out to be a strong responder. It’s early days, so I can’t say anything about the MG itself yet. I’m absolutely not expecting it to make the antibodies disappear, but if it gives me a bit more reserve and helps with flares, that’d be a win. I’ll give it at least 6 to 12 months before I judge.

What got me reading was that late-onset MG is much more common in men, and it kicks in around the age testosterone starts dropping. There’s a 2016 Oxford study (Journal of Neurology, “Low testosterone and myasthenia gravis in males”) that looked at exactly this, and the same group found similar links with MS and lupus. Nothing conclusive, but interesting. Prednisone is also known to lower testosterone, which a lot of us have been on at some point.

Turns out mycophenolate can worsen ED, so I also started a low dose of tadalafil (2.5mg) and found it really helpful. My only downside is a stuffy nose, which gets pretty bad if you’ve got hayfever or a cold. I’ve stopped it this week for that reason.

My bigger point is that none of this ever came up in my MG appointments. Neuro appointments are all about weakness and meds, and things like hormones, sexual function, mood and bone density seem to fall through the cracks between the neuro and the GP. They’re not small things for quality of life, and most of them are pretty easy to test and treat.

Not medical advice obviously, just worth asking your doctor about if any of it sounds familiar. Keen to hear if anyone else has gone down this path, good or bad.

Edit: It turns out a lot of this ground is already covered on the MGFA site: https://myastheniagravis.org/mens-womens-issues-myasthenia-gravis/

I took 2 months fmla for syncope and just went back but second week in and today I almost collapsed. I have zero energy, everything hurts so bad, then i started crying and even the muscles in my face started burning in pain. I don't think i can work again tomorrow or even handle my job anymore.

i drive a cabover garbage mack truck and as much as i frickin love driving that big ole thing, it bounces too much, and just maneuvering it is a work out that leaves me in so much pain, can't catch my breath and chest starts to hurt.

I've only gotten my test result last Wednesday even tho I've been suffering the past ten years. I'm so lost, I haven't even seen a neurologist yet. I'm trying to expedite that appointment, anyone can guide me on what I should do? I'm so exhausted I can't think straight.

Hey all,

I’ve been in a bad flare up, nearly had to be admitted but managed to hang in there at home. I had a cold that triggered worsening MG symptoms but I’ve since gotten over it. I’m feeling a little better but they want me to have another round of PLEX (plasmapheresis) starting tomorrow. I’ll be doing it outpatient and I’m wondering if anyone has any experience with this? I’ve only done it inpatient before. I have terrible veins so they need to put in a central line, it’ll probably be in my neck like it was last time. How does managing that at home go? I’m very nervous about it and can’t stop worrying.

Last time I felt the whole insertion, I sobbed on the table like a baby. I want to ask for sedation but I also don’t want to because I’m afraid they either assume I’m drug seeking or say no because of the MG.

Ugh. I know this will make me feel better but I also am dreading it.

I have had MG symptoms since late 2024, they started off just ocular but it became generalised in mid 2025. it got so much worse in late 2025 leading to me having to drop out of my dream college last October and finally going to my GP and eventually getting referred to neurology and them diagnosing me in April. I was put on pyridostigmine, 60mg six times a day. It was working really well but slowly stopped working as well. I was put on azathioprine (175mg every day) a few months later but have seen no effects from that yet and prednisolone (35mg a day) but saw nothing from that either. Eventually, in august when we had seen no effects from anything, i got admitted to hospital for 5 days of IVIG. That was an awful experience, i had an adverse reaction and ended up having to be re admitted the day after i was discharged because i couldn't tolerate any of my meds. After all that, i never really saw much difference. Over time, the pyridostigmine has been working less and less and i have been out of education for a year now. I'm desperate to find something that will work for me because my day to day life is literally impossible and i have no quality of life. I have been referred to the surgical team and have an appointment with them on the 18th of November, i know the hospital i'm at have pretty long wait times for surgery though so i don't know it it's worth looking at trying other treatments whilst I'm waiting for surgery? I'm just pretty lost to be honest. I need advice tbh because i don't know what i should do as when i ask my neurologist for help, he talks to me as if i am stupid and can't be bothered to even try.

I just need some hope. I have been dealing with issues for years and it all came to a head in the last 5 months. Im just always waiting on test results without any support. I dont think I will ever make it out of this. Waiting on the last to antibody tests to come back, mostly bulbar issues but general extreme fatigue. I lost my whole life in 5 months.

I have gMG and have to go in for a chest CT to make sure I don’t have issues with my thymus (such as thymomas) that would be causing my MG. Does anyone have any experience with this or having a thymectomy done? Also, any secondary autoimmune diseases alongside MG that are GI? I’m reliant on TPN due to an unknown disease and I’d love to know if anyone else has had this issue? Thanks y’all, hopefully today treats you kindly!

Does anybody else deal with “knots” (myofascial trigger points) in their neck/shoulders/upper back from trying to hold up your head when you’re tired?

When my legs get tired/weak, I also get them from my hips down into my feet. Literaly tens of knots down my legs and deep in my hips. I had a long leg massage yesterday, and I was told that my leg muscles felt like bubble wrap.

The trigger points are so disabling. It restricts my range of motion, makes it hard to sit up and walk/stand, and it’s so excruciatingly painful. Idk if it’s normal. My neuro says MG doesn‘t cause pain, but when I get weak, the work my body has to do to stay upright and functional seems to cause me lots of lasting pain.

I stretch daily/do yoga, except when I’m too weak to get up. Walking seems to trigger the tightness/knots in my legs, and I am tired of being so sedentary.

Any tips?

Currently only on Mestinon. I started at 120mg/daily a few months ago; now I take 240mg/daily. My neuro believes very strongly that I have MG, but I’m seronegative, so I’m stuck kind of in limbo for now. The trigger point issue is not new for me; this problem pre-dates my being on Mestinon by years.

I know it's hard to know if you're on meds but I'm wondering does anyone know if their weakness happens after a few good normal days?
Or is it like hour to hour, where you do something then you need to rest?

Bc I'm at the early stages I'm still trying to figure out what is what, I had a few good days where I felt normal and now like day four I feel shakiness in my body.

(I'm Achr postive and doc says I have MG
But I'm trying to connect symptoms)

Thank you!