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).

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

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

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