New here need support.
 

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. :Wave-Hello:

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.

When you find a neurologist and get an appointment, try to get the appointment at a time of day when your husbands symptoms are at their worst. If the neurologist you find only bases MG diagnosis on a positive blood test, find another neurologist. There are other tests used, one as easy as the ice pack test. The ice pack is placed on the drooping eyelid, (ptosis) and if the ptosis gets better for a few minutes, it will show MG. (Not true with any other disease/syndrome).

Thanks for the replies
 

Hello all, still figuring out how this works. I appreciate you for responding.
He is going to see a neuro at one of California's research hospitals. Not sure if I can say but, I feel good about it.
He had Bells palsy at 32, so he thinks that is why his eye droops. I disagree, because it comes and goes.

I have pictures showing it at different stages. My worry is the dysarthria, which since October, has been daily.

The nasal voice and choking, have all ramped up since then. His voice is good early in the morning. His cough is weak, and eating brings on the coughing choking gag and nasal regurgitation.

He cannot whistle, and if he smiles, it looks like a snarl.

Is it possible that an exacerbation is how a person finds out they have MG?

So I won't bug you guys until he sees the neuro, but I needed someone to talk to. The neg test threw me for a loop, and got me thinking of worse things.

Thank you all for being here for me right now, I am scared and your words help.

I believe that binding antibody result is highly positive. You don’t have to test positive for all antibodies to have MG.

Both binding and blocking antibodies correlate with disease severity in myasthenia gravis - PubMed

Hi there
 

From one who has diagnosis from doctors that DONT count. In other words not neurologists. The ENT who diagnosed my speech issue or loss as clearly myasthenia doesn’t count. He even angrily said who is your neuro. And aren’t they treating you! Then there is my New York cardiologist (I live in Iowa) that says all that’s wrong with me is myasthenia Gravis that needs aggressive treatment. Oh also the advanced eye Clinic who were first to start writing down myasthenia. I sure agree that the time of day your husband is examined is very important. Oh and if he is better in cold weather wait till summer maybe. My first Mayo Clinic appointment was December and even I knew I was way too good that day to get a true best exam. An exam that ended with my admission to hospital was after an extremely hot shower that left me unable to walk for an hour. The neuro said “you can hardly talk” when I finally got to her. Sculptor44

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!

I have been on this site for some months but this is my first response to a request for advice - I first experienced double vision and drooping eyelids in August, 2020. I attended a specialist eye practicioner who was suspicious of my situation - he placed ice packs wrapped in tea towels on my eyes for 15 minutes - he had his assistant film it - when ice packs removed both eyes wide open - he prescribed Mestinon (weak dose) and told me if I had any further issues to attend thr Neurology Dept at a major hospital in the city (Melbourne, Aust). Within two days I underwent major loss of energy, so much so I thought I might be dying. After about three hours I came good and put off the Hospital. Two days later it happened again - I called an ambulance and went to the Royal Melbourne Hospital - the Emergency dept conducted the ice pack test again and filmed it for teaching purposes - I was admitted to Neurology and they spent four days testing me for everything - at the end of the four days they concluded the eye specialist was right though the confirming blood test result was not available for three weeks - apparently the only laboratory able to do the required test was in Brisbane - after three weeks the test confirmed the diagnosis - when I left the Hospital after four days I was on Mestinon and Prednisolone -they rung me a week later and asked if I was any better - I wasn't so they had me return to the Hospital for a further week when they did blood transfusions every days for the week - since then they have increased Mestinon to 420mg a day and Prednisolone to 50mg a day - the medication arrested all of the MG symptoms except it could't get my head up properly, about half way - its now May,2021 and rthey afe just beginning to reduce my prednisolone, now down to 20mg daily - my legs are in terrible pain but I am told that will improve as I'm getting off steroids - they are replacing the steroid with mycophenlate (2000 units per day) - apparently mycophenlate is used for surpression of the immune system with people undergoing organ transplant - I hope my story gives you an understanding of the process and what to expect - its no fun but my neurologist insists she will get me back to near normal within the next six months - I hope she is right but time will tell