u/FlexibleWanderlust

Would really appreciate recommendations for primary care doctors who understand hypermobile Ehlers Danlos and the things that can come with it (POTS, MCAS, vascular compressions, etc). Diagnoses are already tested and confirmed - just need someone who can be the quarterback. There can be a lot of biases that come with chronic illnesses and I need someone who gets it. I saw the POTS thread but doesn't quite seem to cover my needs.

Bonus points if they're within the Cornell system, but will look anywhere. Thank you!

Hi! I have Nutcracker syndrome on my CT venogram, which was ordered by my PCP, and have symptoms that seem to line up pretty well with pelvic congestion syndrome. I have a history of hEDS and POTS recently had a bad experience with a vascular surgeon who clearly had a lot of biases and didn't seem very familiar with abdominal vascular compression syndromes. I'd really appreciate recommendations for physicians (either vascular surgery or IR) in Boston or New York who are familiar with this. Thank you!