r/MyastheniaGravis

Been talking 3 pills of mestinon a Day, doing every thing im told I dont know if im doing something wrong or if its Just gonna Keep getting worse

Hi guys! I am an international grad student with myasthenia gravis moving to arizona state university soon. My symptoms are mostly well controlled by rituximad, but just in case of emergency, I would like to know are there any hospitals/clinics or neuros/doctors in arizona, especially closer to tempe that specializes or have lots of experience jn myasthenia gravis patients?

Thanks!!!

28F here. Been dealing with significant episodic symptoms for 6+ years. All antibodies negative, RNS only showed one borderline finding in orbicularis, everything else normal. Yet the symptoms are very much not normal.

I *am* suspected to have mitochondrial myopathy but all the MG symptoms fluctuate too much for it to be myopathic in origin.

I’ve been going down the rabbit hole of Congenital Myasthenic Syndrome lately. I know it’s usually a childhood thing but apparently late/adult onset does exist and I can’t help wondering if some of us in the seronegative ambiguous-findings camp might actually have an undiagnosed CMS.

Has anyone here looked into this or had genetic testing done? Or is anyone else just stuck in the same frustrating diagnostic limbo?

Would love to hear from people in the same boat.

I’ve been having problems with swallowing, breathing and talking for around a year and a half and people kept telling me I was just anxious when I went to A&E and now I’ve been told today I have antibodies and I have myasthenia gravis. I was admitted to hospital last year because I lost so much weight from not being able to swallow and they discharged me saying they didn’t want to medicalise a problem that isn’t medical and that oesophageal weakness doesn’t mean anything. I’m so angry.

I am diagnosed with MG, quite high achr levels, but very mild symptoms, which I know makes me fortunate. I try really hard to avoid any medication or activity that could worsen the MG.

My problem is I have a granddaughter in preschool who I help take care of, and she brings home a cold to me four or five times a year. when I have a cold, there's always a few days where stuff is draining down the back of my throat so badly that I end up coughing most of the night, and not getting any sleep. I know we can't take regular decongestants, because they're anticholinergic and can worsen the MG, but has anybody found anything we CAN take to dry up the mucus that's running down the back of my throat as I post this?

Hi! I’m getting my thymectomy next week and I live alone. My mom wants me to stay with her for a few days after the surgery but I would kind of prefer to be at home. What do you recommend or wish you had prepared for the days after surgery? Do I need to sleep in an armchair or can I sleep in bed with a lot of pillows? I am trying to borrow some button up shirts from a friend, but is there any other stuff like that that you think would be helpful from your experience?

Thank you so much in advance! It’s scary!

Hello all, I am seeking some guidance or really just some thoughts from other humans whose dogs have MG.

Quick Backstory:

Our pooch (5m) is a super mutt that we rescued at 8 weeks. He’s been a very healthy dog never had any health issues that the vets were worried about at his yearly’s. Last couple of years he’s gone in phases of how well he eats. Few weeks he would eat great, then a few weeks he would refuse and then vomit stomach bile the next day. Then back to eating great.

At the end of March we took him to Michigan State University emergency vet, because he was drooling uncontrollably and coughing and his face was also droopy like he had suffered a stroke. After 5 nights at the vet, his back legs becoming immobile, a positive aCH test from UC Davis, and $7,000 they determined he had MG, and a case of aspiration pneumonia. They taught us all about the autoimmune disease and the care required.

They sent us home with him and plenty of medications. We have been using a Bailey chair (he sits in it for 30 minutes to a T after eating or drinking), wetting down his canned Grain free dog food, and he gets his medication every day as prescribed, at the times prescribed. no matter what.

It’s now been about 3-4 weeks since we brought him home and he has kicked his pneumonia but after his dinner feeding and dinner feeding only, he has been regurgitating. Some nights it’s ever hour until morning, other nights it’s non at all.

If anybody has any tips, tricks, discoveries that they have used to help, please reply. We are at a loss.

Is this going to clear up?

Are we too early to be worried about it?

Thanks for reading

She was diagnosed with myasthenia gravis, a condition we barely understood at the time. Everything happened so fast, and honestly, we never fully grasped what she was going through.

She was taking a lot of medications, trying to manage the symptoms. Over time, she had several myasthenic crises that landed her in the ICU, where she had to be intubated and put on a ventilator to help her breathe.

Then one day, we went to a birthday party. There was a small child there who had a fever — we didn’t think much of it at the time. But she ended up catching an infection, and it developed into a severe pneumococcal pneumonia.

After that, things got much worse.

In the hospital, her condition kept deteriorating. The doctors had to sedate her heavily and kept increasing the dose of medications like Fentanyl to keep her comfortable and manage the pain. I didn’t understand what was happening back then.

I remember seeing her there, unable to move because of the sedation, but it felt like she could still hear us. I could see tears coming out of her eyes, and that image has stayed with me ever since.

Eventually, her body couldn’t handle it anymore, and she passed away.

And ever since then, I feel guilty every single day. I didn’t know what to do. I still don’t know if I could have done anything differently.

My family blames me. And after all these years, I keep asking myself the same questions — was it the illness, the medications, the doctors… or was it me, for not understanding how to help her?

I just don’t know how to let this go.

I was diagnosed with ADHD back when I was around 15-16 and managed fairly okay without meds, but now I'm 31 and have been struggling a lot with my adhd lately. I've talked about it with my therapists and with a neuro once, but just scratched the surface of it with the neuro. Basically I know adhd meds can worsen MG symptoms but there's a chance they won't basically. I'm on mestinon, prednisone and azathioprine. Is anyone else neurospicy with MG that's been able to have a little success with adhd medication? I feel like I'm losing my mind y'all

Hi. My genetic test came back with "autosomal recessive congenital myasthenic syndrome."

I also have scoliosis and uneven hips. I assumed this was the cause of a lot of my issues but my neromuscular doctor notice some muscle weakness in my face and limbs when he ordered the test.

My job is making me even worse as it's a warehouse job. I can barely walk some days when I come home. Everyone tells me to quit but I cant afford to quit. Bill collectors and my landlord definitely don't care.

I've been in so much pain and I feel generally sick this week. Like I feel light headed and so tired I can barely stay awake. I tried contacting the doctor who ordered the test but he won't answer his messages. I feel like he's going make me wait till August because he rather be paid for his advice. When should I go to the ER?

Anyone else who could give me advice?

I’ve managed to get either food poisoning or the stomach flu (jury’s out).. but anyway I’m just vomiting anything I consume back up (I’m mostly worried about not taking my meds- mestinon and cellcept.) I can feel myself getting weak from dehydration and probably from not having the mestinon.. and I’m worried this is going to spiral into a crisis. As of right now I can still struggle to the kitchen but that’s going downhill quickly. Anyone have any recommendations?

Hello all!

Im diagnosed seronegative MG with symptoms dating back 10 years. Prior to Oct 2025, didnt have any breathing issues just swallowing, speech and double vision and very mild ptosis.

Because its so new, I had a question about how to interpret NIF values. When I first went to the ED with the new onset breathing issues, my NIF was a -35. The doctor said "thats normal" and almost discharged me on the spot.

In fairness, I hadnt been diagnosed officially yet because my symptoms were mild and im seronegative. So they werent really looking for that. But I dont have asthma and had excellent respiratory function before that.

What does -35 tell us with MG? My understanding is that it means my breathing is not doing particularly well but not at ventilation need. I certainly felt like my lungs were very weak and got weaker after trying hard on the NIF. Discharged at -45.

30M diagnosed 15 years ago... symptoms are much better than before, idk if it normal but I noticed that one week per month I'm usually very weak.. Last summer I saw video of women getting sting by bees and she recover from MG. I tried it myself I got sting by like 3 bees and I felt better from symptoms.. have any else try it before ?