Waiting on blood tests for ocular myasthenia gravis… I have questions
Already had clean MRI AND CT and tested for other auto immune disorders.
30F. I’ve been dealing with double vision for over three years now. It is always the same direction and the severity varies throughout the day. Most of the time, it isn’t noticeable except in extreme gazes, but since this started, I’ve had probably 5-8 “flares” where the double vision is severe and impedes my daily functioning. At first during these flares, the misalignment in my eyes was not noticeable to anyone just looking at me, but since last year, when a flare happens, it is very noticeable to other people. I look like a mad scientist. During this last flare, I also had a slight dropping eyelid on the same eye that has trouble staying aligned. The confusing part is, these “flares” definitely run with a migraine, or what feels like a migraine, and that’s why no doctor has wanted to test me for OMG. I have been told on numerous occasions that MG never runs with pain. I try to explain I don’t have pain in my daily life. I only have pain with these flares, which very well could be migraines and could just simply be making the symptoms worse. I do have a history of migraines sporadically through my life but I’ve never experienced any type of double vision until the sudden onset 3 years ago. Also, any time I’ve seen a specialist, it’s been on a good day so I
haven’t been presenting with any notable neurological symptoms. Also, this year I’ve had extreme fatigue to the point I could fall asleep multiple times a day if I let myself. I’ve noticed fluctuating ability in the gym and also POTS-like symptoms but it varies from day to day.
My question is- do your symptoms fluctuate daily? Do you have days of very minimal symptoms? And do you have flares where everything is way worse? Does this sound like something I should be investigating?