I sure hope you can find a specialist somewhere that has seen this. I think you are right to follow your gut on this and look for answers.
Sidenote--I STILL laugh about how I sent the link for it to the WRONG messenger person when we were talking--pics and all--she must have been BAFFLED.
I hope this isn't your zebra, but the doctors aren't really considering other options and are being entirely too dismissive. You are in my thoughts, my friend.