Well hey there "riley girl". So sorry for such a late reply, however I'm certainly glad I checked this site out again to discover your kind message to me 🙂

First off, I sure hope you've managed to find some relief from this pesky affliction. Yes, I'm still living with - although it is substantially less severe than when I first posted on here. Perhaps that progress shall continue… TBD. I saw several baffled doc's I saw who all misdiagnosed me, but the seventh one concluded that it was the worst case of BMES he's ever seen - and the first time he'd seen it in person/outside of his study material. Yikes. But this may help explain why it's taking forever to subside.

I concur that timing is everything, and only God knows how much time this will take, but I remain faithful and hopeful. If not, I may try something called Iloprost that I uncovered in my exhaustive research about this frustratingly little understood, non-specific diagnosis.

I was curious; is your edema in the ankle as well, or the more "common" knee or hip location? If you'd like (just to compare notes, so to speak), I could email you a picture of the ankle when it was at its worst point. And should you happen to have a photo of yours, I'd be fascinated to see that as well.
~Brady