How I Found Out
I turned 61 in May of 2025. I am a maile. I am obese and was diagnosed with Type 2 Diabetes in 2016. And just about the time I was feeling comfortable and in control of my Diabetes,I started experiencing disturbing symptoms.
In April / early May this year I began to lose strength in my jaw. Chewing was hard, then swallowing was next to impossible.a few days later at work the last two fingers both went numb and twitchy. I had so little control of my hands I could not type. (I am in IT and am constantly on the keyboard). And the final straw was a droopy eye and double vision.
I am a stubborn pig-headed man and tried to gut it out for a week or so. My wife convinced to make an appointment with my doctor. He had no idea what the problem was but, I give him credit. He did blood tests, (not the right ones), but on top of that he sent me to specialist after specialist, MRIs CT scans, EKGs you name it. Google is not your friend. When I searched my symptoms all kinds of frightening and disturbing possibilities popped up, and my mind went wild.
One of the specialists was a neurologist. within an hour of various in office tests he had a suspicion of what it was. told me me it was likely Myasthenia Gravis. Sent me for an immediate specific blood test. When it came back it was confirmed. I have MG.
I am losing control of my hands right now so I cannot continue at this time, but I will post again about dealing with the diagnosis and the first couple of months dealing with the symptoms and problems I have had with the treatments thus far
yep i went through nearly identical steps but was diagnosed much earlier, from having double vision & chewing issues. I was at a restaraunt and complained my meat was really bad, my son tried it and said he thought it was fine and i'm like this is awful I can barely chew it. The double vision sent me to the hospital and a nuerologist diagnosed MG right away, and gave me some meds to try, and the double vision went away in about 2 hours, then i had to wait 2 weeks for the blood test but it was pretty much that I knew I had it from the reaction to the meds.
The inability to swallow, and chew and talk and same deal with the fingers and twitching, being a software person who types fast, i was turned into a 2-4 finger typer. It got worst and worst, even with increase meds, until i started infusion theraphy, IVIG at first, then mestinon/vyvgart. Both infusions pretty much put me back at a somewhat normal ability, i could speak, swallow and eat normally again, but am still much weaker and can't do strenuous activity. No hiking 4k's, but I can carry laundry up stairs and take shortish hikes 1-2 miles, as long at is is mostly flat. Anything steep and i'm stopping every 50-100 feet to rest.
Just make sure you are aware of the stress aspects of MG, which can send you into a crisis, seriously have a plan on what to do if a crisis hits. I strong recomend having a cpap or something to help you breath readily available in the home.
Thanks for posting. I am anxious to see the rest of your story.
thank you. yesterday I posted a topic that continues with Initial Treatment Experiences https://myasthenia-gravis.com/forums/initial-treatent-experiences. Comments and thoughts on that content would be appreciated. I am still a little freaked out
