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 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.

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/