Hello, I have been lurking here for awhile. My husband has had symptoms of MG since April of 2020.

His symptoms started a few months after being very sick with a respiratory virus. Cough never went away, then came sleepiness. He started talking like he was drunk in the afternoon, if he took a nap it would mostly go away.

He experienced just that all summer, then in Oct started choking alot. He would clear his throat alot, and end up gagging and liquid would come out of his nose.

He just recently went to the hospital after a bad choking on the side of the road.

He had ct scans, mri, bloods, and a swallow scan. The neuro said probably MG. His antibody test showed 0 binding, 13 blocking. They didn't do the anti musk.

So his pcp said he definitely doesn't have MG. I think the pcp is wrong. He says that test is the gold standard. I am reading that a small number of people are seronegative.

His symptoms are mostly bulbar, however he has one droopy eyelid, no weakness in the legs or arms.

My biggest fear, is they won't dig and he has a weak cough and choking. So while they are busy looking for other things he is hovering near a crisis. I'm not a doctor, but I'm irritated with his pcp for just writing it off after the negative antibody test. He's now on to ms which I think is less likely (no lesions)

Have any of you had this happen?

Hello Bearsmommy,
I don't have MG so can't help you with those questions but I just wanted to say welcome to the NeuroTalk Support Groups. I hope you will find both information and support here.

Welcome Bearsmommy.

It is not unusual to have difficulty being diagnosed. Some doctors are incapable of giving a disease a name without overwhelmingly positive test results.

In my opinion, your husband likely has MG. If so, he will need to be seen by more than a PCP. I would suggest you go see or get a referral to a neurologist, preferably one who specializes in neuromuscular diseases.

The bulbar weakness is very concerning and dangerous. Make sure everyone knows how to do the Heimlich maneuver, including your husband in case he needs to save himself.

Keep fighting!

Welcome, Bearsmommy,

Your concerns are certainly justified, it seems to me. I don't have MG but did find this. That antibody test isn't always correct:

Myasthenia gravis - Diagnosis
- NHS

I do have MS, and your husband might have MS though it would be unusual for choking to be a first indication of it. Not unheard of though as just about anything can happen with MS.

It sounds as if he's been suffering for nearly a year now. I hope that some competent medical professionals will come up with some answers for you soon.

Hi Bearsmommy

Welcome to the community .

I am sorry to read about your husband's probable MG which is something I know little about.

I hope the he will get good help from a neurologist who does know about it.

Best wishes.

Hi. My symptoms started with droopy eyes and double vision after a minor forehead concussion playing with daughter when she was 2 years old. That was 17 years ago. At the time I visited several specialist and sud-specialist with no diagnosis (almost 2 years). After educating myself I asked a neurologist to prescribe Pyridostigmine (Mestinon) to see how my eyes would react. After couple of days my eyes were going back to almost normal. Since then I started the same medication and prednisone to control symptoms under MG experienced Neurologist. It started ocular MG and then became generalized after 4 years. I never tested positive for musk antibodies. I was diagnosed based on the symptoms; droopy eyes, double vision, difficulty swallowing, weakness throughout my whole body, shortness of breath, falling,... All those symptoms and severity would come and go depending level of physical and emotional stress, There are more things that I can say but will leave that for later as needed. Good luck!