Cogan's lid twitch
I have tested negative for the antibodies, but I think I still might have the ocular version. I did the coggins eyelid twitch test at home and it looks positive to me but I wanted to hear your guys's thoughts? Here's a link to a close-up of my eye during the test https://imgur.com/a/w1WzTv3 I also have ptosis. Here's a link to my full facial view during the test. https://imgur.com/a/pK4HpZA
I'm currently waiting for an appointment but they are scheduling quite a few months out at all the clinics that I've contacted for neuromuscular specialties
Prism glasses usually don't work for MG since the muscle fatigue changes during the day and you didn't mention diplopia (double vision) which is what prism glasses are for. However, an Opthalmologist can test how severe the diplopia is - that is how I finally got some help and a referral to a neurologist as he knew something was wrong neurologically with the way it was acting in my case. I have had several Opthalmoligists see and measure the diplopia and gave me advice. One neurologist said "diplopia is subjective" as opposed to objective, meaning that I could be faking it or making it up - but every Opthalmologist I have had can measure it and observe it (not always measurable for other diseases that cause diplopia). My suggestion is to keep educating yourself to see if the symptoms fit until that time you can see someone. Some myasthenics are seronegative but they do have it, which it seems you already know.
What does your primary physician say? Most primaries will have you try mestinon as you wait. Ultimately they will probably do a single fiber EMG. Have you gone to an eye doctor? They also sometimes try prism glasses in the interim. All of these bits of evidence will help the neurologist when you finally get there. Juliana (team member)
