My doctor said I probably have it given my response to pyridostigmine for my eye symptoms (almost total resolution). My RNS and bloodwork have been normal but I do experience eyelid drooping, double vision, muscle weakness, and fatigue. Im confused and frustrated at this point. Thanks everyone!
Oh my! It certainly is a bumpy ride. Thanks for the support ❤️
I had a muscle biopsy after my other tests were negative. My Dr. asked if I’d been tested for MG my first visit. I do have MS but my droopy eye is so noticeable! He asked if I would put a cold washcloth over my eyes the next morning and if they opened all the way I should be treated. Sure enough, they were both wide open and test after test was negative. It’s a tough disease to diagnose.
I think it will take a celebrity to make people, doctors, E.R.’s more aware of the various problems. Only they could raise the money for R &D, until then it’s a mystery.
That confusion and frustration is completely understandable — but you are definitely not alone in this experience. An MGteam member shared something very similar: "None of my bloodwork was positive, but I was diagnosed on the basis of symptoms, nerve conduction studies, and response to pyridostigmine (Mestinon)."
Negative Show Full Answer