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Paul,
Not very big on forums but I did read about what’s happened to you. I too had a hard time being diagnosed even though I tested positive. None of the treatments worked for me and both my eyes were closing on their own by like 10:00 in the morning. Had a great surgeon operate and use muscles for my forehead too make my eyes open and close properly. Still have the problem where I can’t seem to get glasses to work for me as I still see cross-eyed sometimes and have a hard time with depth perception. The biggest thing I’ll tell you is to be your own advocate. If he feel something is not being handled the way you want ask for it to be handled and if they don’t then see another doctor. GMG is just too confusing for some neurologists. I happened to move from Virginia Beach to Niagara Falls New York and I have an absolutely excellent neurologist at Dent neurology. They’ve worked tirelessly to help me with my vision problems etc. I’ve had probably 12 MRIs this year. It looks as if I now have a diagnosis of something called keyhole aqueduct syndrome. Super super rare, like 9 to 15 people in the world. Just make sure wherever you go they are cutting edge and super concerned about their patients. And listen to their patients go the extra mile Make sure anything they diagnose you with is correct.
Best of luck to you in the future