Hey, JF, do you have a more informal name?
Like Jello?
My aunt had polymyositis. She did indeed have ptosis because those muscles were also "attacked." MG doesn't cause pain so I guess your doctor is looking at polymyositis because of that. Inflammation does cause pain.
I should probably do a separate post on ptosis and double vision. If a person has ptosis/droopy eyelids, they DO have double vision (DV). I had DV my entire life but chalked it up to astigmatism. It wasn't until the neuro-ophthalmologist I saw in 2000 showed me that I did and why was I able to "see" it. I was so used to it, that I didn't even realize what it was.
I'll paste a photo from the AAFP article on all things eye related so you can see the muscle anatomy from the side. We have so many muscles in our faces.
When the muscles around the eye are weak, they change how the two eyes focus. That's how and why a person gets DV. The eyes focus differently. If you hold your head straight and move your index finger towards your eyes and back, you will more than likely see the DV. Some people see it in front, others to the side (don't move you head for that, just look to the side with your eyes). Then if you close one eye, the DV disappears.
I've had to take photos of my entire face to show the droopiness, in order to "prove" it to neurologists. Oh ye of little faith. It's quite dramatic to do that. My entire face droops, even my nose!!! Scary looking.
I hope you get answers soon.
Annie