@jlharsh
I'm newly diagnosed with FMD and looking for a specialist to help manage my care. This has been overwhelming. I have been monitoring my carotids for 23 years since I was 43 because It was found that my ICA were mild tortuous. I've had numerous Ultrasounds, MRAs over the years. In 2023 after beginning Losartan for fluctuating BP and noticing my feet turning deep reddish and blue I sought help. Various vascular, dopplers, rheumatologists from Northwestern Medicine. I then contacted and was seen at Mayo (briefly) they did a doppler and I was told to wear compression socks. Being a lifelong fitness and sports enthusiast, this was not sitting well, I knew something wasn't right. I went back to Vascular and he sent me for a full Abdomen, pelvis and lower extremity MRA. No concerns, no stenosis. Now in 2026 I went back to vascular because skin now mottled. They sent me back to Rheumatology, Hematology, cardiology and another round of MRAs and a CT on neck and head. I'm told FMD in carotids, and renal arteries AND it was retrospectively there in 2023 along with severe stenosis of celiac artery, though they feel its compressed from medial arcuate ligament. NONE of this was mentioned in 2023. Getting help and guidance has been my worst part of this. I'm not confident in my care or who's managing my care. I did look up and join FB support and research and am trying to see a Dr. at North Shore Endeavor Health who supposedly run a FMD clinic but no one has called me back. So frustrating. Any advice would be helpful.