Hi Pink Flamingo,
I call this "the scary club". Friends laugh at this and laughter is good - even though no one understands. My journey started out with vision problems a year ago, had cataract surgery and thought the surgeon was not as sharp (pun intended) as promoted. I've worn contacts most of my life, but lately it's been blurry vision to the point where night driving is hard. Totally hard, blurry, as if there is water on the road. Computer screen? I am constantly increasing the size of font.
Then there were the headaches, mild, and explainable. There has been a lot of stress over the past few months - a year really. Of course that made sense.
Call us "lucky". Neither of us have stroked out. Yea, not funny, but a good number do not learn they are JAK2 w/ET until either a stroke or routine bloodwork.
Have you tried this site? MPN Research Foundation
Lots of good info. Register and they'll send you clear explanations in a nice reference booklet.
Do an ONLINE SEARCH to find a different Hematologist. I like mine - he is taking it one step at a time, and he takes the time to explain everything to me. Keep looking - the good ones are out there. You might be able to find one who does virtual appointments.
Geez... I wish we could all get together for coffee or wine! Sometimes you just need a hug. Or a nap.
Best wishes,
Sherry