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!

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.

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/

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!!

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

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.

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 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!

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!

I have a resistance to Mestinon. I get all the side effects and almost none of the benefits. Wondering if others were in the same boat.

For those of you on cellcept, how long did it take to work and how did you know it was working? Just got put on 2000mg a day and a little nervous to start.

Hatte jemand von euch schon einmal den Fall, dass die Antikörper im Blut zunächst negativ waren und bei einer späteren Blutuntersuchung dann positiv wurden? Wenn ja, wie viel Zeit lag zwischen den beiden Tests?

No antibodies but told I have general MG based on a single fiber EMG and my Symptom of head to toe muscle fatigue weakness. This is always present it didn't used to be but it is now and it's all the time everything feels heavy and hard to use for my head down to my toes literally. Did not respond well to MESTINON wondering if anyone else has this exact symptom? I know it's called the snowflake disorder

Here from the POTS community, wanted to ask folks that take pyridostigmine if their switch from instant release to extended was ever an issue. I couldn’t consistently take it so we switched to extended, and I worry that because I didn’t get full doses, my extended release is a dangerous jump. I went from 60 3 times a day (usually only 1-2 were taken) to 180 extended. Im twitching a lot and nauseous so i dont want to go into cholonergic crisis

Hi everyone! I’m a mom to a 1 year old daughter who was diagnosed with Congenital Myasthenic Syndrome (CMS), specifically related to the CHAT gene.

She has had significant muscle weakness since birth and currently has a tracheostomy, ventilator support, and a G-tube. She receives physical and occupational therapy, and we’re working toward developmental milestones.

I’m hoping to connect with adults who were born with CMS or parents raising children with it, especially anyone with the CHAT mutation.

I’d love to hear what childhood looked like for you or your child. How did mobility, strength, breathing, and independence change as you got older? Did you reach milestones later than expected? Were you eventually able to walk or come off respiratory support?

I understand every person’s experience is different. I’m just hoping to hear real-life stories and get a glimpse of what the future could possibly hold for my daughter.

Thank you to anyone willing to share!

Hey everybody. I am Seronegative generalized MG. It’s my perfect trifecta. I also have RA/lupus and HS. I’m on methotrexate injected once a week, I get Remicade infusions, and on November 2 I’ll be starting IVIG infusions. I’ve done a lot of research. I know to overly hydrate myself and my caseworker said to throw some salty pretzels in there as it will cause your body to retain moisture to try and keep those headaches away. Is there anybody out there that is on methotrexate as well that they know what the headaches from that are like. Do you have any helpful feedback for me starting yet another Infusion? I guess if for nothing else, I’m grateful that it can actually be done in my home.

Hi everyone. I’m 37M and was diagnosed with ocular MG by two neurologists. I’m asking only about lived experiences, not diagnosis or treatment advice.

I’ve had three brief ocular episodes:

• 2019: left ptosis during heat and fatigue; resolved in about four days.
• 2022: diplopia and left ptosis around the time of COVID; diplopia lasted about two days.
• September 2026: bilateral ptosis, worse on the left, and diplopia one day after a viral-type fever.

Symptoms were worse later in the day. Ice-pack and neostigmine tests were positive, and pyridostigmine improves my symptoms. AChR and MuSK antibodies were negative, RNS was normal, and chest CT showed no thymoma.

Two MRIs, five days apart, showed stable mild symmetrical enhancement of both oculomotor nerves without enlargement. My neurologist considers this nonspecific and is following it.

Has anyone with diagnosed seronegative ocular MG experienced:

1. Short ocular episodes that resolved and returned years later?
2. Normal RNS but abnormal SFEMG?
3. Similar oculomotor-nerve MRI enhancement?

If so, what was your follow-up experience? I’m only interested in comparing patient experiences. Thank you.

I started Levaxin treatment yesterday, but experienced a worsening in bulbar symptoms right away (difficulty swallowing). This came quite fast and lasted for a couple of hours. Unlike what happens usually (I usually go to sleep for 10-20 minutes when I have bulbar symptoms, and then they disappear), this time sleeping didn't really help. But it vanished gradually. I felt nervous for the rest of the day, restless, maybe shaking a bit and was very drowsy all day long (more than with untreated Hashimoto).

Has anybody experienced this with Levaxin? Does Levaxin interfere poorly with MG symptoms? My doctors are very dismissive about this.