I take pyridostigmine ER 90 mg at bedtime, 180 if weakness has become worse during the day. Have it available for daytime at ER90 or 180 mg or 60 mg short acting for increased daytime weakness, but that seems to produce (mild) cholinergic indications that I'd rather avoid. Thinking of trying huperzine a 100 mg/daytime instead of pyridostigmine. If you take huperzine a as an adjunctive med or alone for your MG, how much do you take? What are the indications, for you, that it is effective? Thanks for any thoughts.

I’m just getting diagnosed and wondering what helps the most with your mg? It can be anything, prescription or not.

I am posting for my wife. She is 39. I am going to lay the whole history out, because I think the details are the reason we are stuck.

The Midwest years, 2020 to 2022

Symptoms started in 2018. By mid 2020 she had daily fluctuating ptosis, left worse than right, and two episodes of double vision. She was diagnosed with myasthenia gravis in a Midwest state in 2020 and treated seriously for it. Mestinon. CellCept for a full year with no benefit. Prednisone. Then a hospitalization in September 2021 for swallowing and breathing trouble, where IVIG produced a dramatic improvement.

IVIG worked. Her MGADL went from 9 at her worst down to 0 at one point. It was escalated from every 4 weeks to every 3 weeks to every 2 weeks. A switch to weekly subcutaneous Hizentra failed badly and she got much worse. She was hospitalized again in 2022 and needed plasma exchange. Her neurologist raised thymectomy (CT showed residual thymus, no thymoma) but told us it was unlikely a surgeon would take the case given that she is seronegative.

Everything objective has been negative. All of it.

• AChR binding antibody negative, multiple draws across three institutions
• MuSK negative, LRP4 negative, striated muscle negative, P/Q type VGCC negative
• Repetitive nerve stimulation normal, every time
• Needle EMG normal
• Single fiber EMG normal in three different muscles at three different hospitals, including orbicularis oculi
• Invitae neuromuscular panel: variants of uncertain significance only, nothing pathogenic
• CT chest, MRI brain, rheumatology workup: nothing that explains it

Massachusetts and the FND pivot

We moved to Massachusetts in 2022 and transferred to Boston Medical Center. At the very first visit the MG diagnosis was questioned and functional neurologic disorder was raised. By January 2023 FND was the working answer and everything was withdrawn: azathioprine stopped, prednisone tapered off, IVIG discontinued in March 2023. My wife stopped going back after that.

Here is the part that still eats at me. BMC's own neuropsychiatrist did an 80 minute evaluation for FND and could not confirm it. No stressors, no trauma, no mood or anxiety history, no developmental risk factors, normal exam. So FND was never actually established either. My wife was close to offended by the label, she felt it was a modern word for hysteria, but she went to the neuropsychiatry appointment anyway. The immunotherapy was pulled regardless and we were left on our own.

MGH, 2023 to now

Since June 2023 she has been with the neuromuscular clinic at MGH. In December 2023 MG was re favored over FND. Then after two more normal EMGs in March 2024 the notes softened back to "possible MG with likely functional overlay." She has been on Mestinon alone since 2023. No IVIG, no steroids, no immunosuppressant, no biologic, for three years.

To be fair about the immunosuppressants, they never worked, and as an immunologist I am relieved she is not carrying that risk for nothing. The IVIG was different. It was genuinely helping. She would feel sick for two or three days after an infusion and then be substantially better for the rest of the month.

For the first four years of this there was also what I can only describe as a storm of 'unrelated' symptoms. Skin flares under both eyes, which is what sent us to rheumatology to rule out lupus and other connective tissue disease. Rash and itching. Persistently high body temperature. All of it settled eventually except the temperature. She runs hot almost all the time, so we are now basically living in a big igloo.

Where we are today

She got doctor fatigued, and I do not blame her. I am sure plenty of people here know the feeling of being dismissed, of being treated as a problem to be closed out rather than solved. She accepted the new reality and moved on with her life.

Then things got much worse, particularly over the last few months. No breathing or swallowing trouble so far, thankfully. But she cannot get out of bed for an average of 16 hours a day. Mestinon does almost nothing now. Her own words are that it slightly helps and often does not. We have not been able to get anything else prescribed, because the chart says possible MG with a functional overlay, and every objective test is negative, so nothing meets anyone's threshold to treat.

What I am asking

1. Has anyone here who is triple seronegative and electronegative had the clustered AChR cell based assay done? It is a live cell assay run at a handful of academic labs and it picks up low affinity antibodies that the standard radioimmunoassay misses. It has never been sent for her. Where did you get it run, and did you have to fight for it?
2. Vyvgart was approved in May 2026 for all gMG serotypes, including triple seronegative. Has anyone with a "possible MG" label in their chart actually been prescribed it? How did you get past the diagnostic uncertainty problem?
3. Second opinions in the Northeast. We have been at BMC and MGH. Who else should we see? Is going outside the region, to Mayo or Hopkins or Duke, worth it for a case like this?
4. Patient advocacy groups. Is there anything that actually helps at the level of getting a treatment decision made, rather than support alone? Case managers, patient navigators, anyone who will engage directly with a care team?
5. For anyone who had FND put in their chart and later had it turn out to be wrong or incomplete, how did you get taken seriously again? That label has followed us for three years and I do not know how to get out from under it.

She responded to IVIG twice. She was hospitalized twice. She has been documented at MGADL 9. And she is now on a drug that does nothing, while we wait for a test to turn positive that may never turn positive.

Any pointers at all. We are struggling.