Fibromuscular dysplasia (FMD): Want to connect

@parrot53 with my FMD, I experience neck, sinus (left side), occasional chest pain, back pain, leg/calf cramps/heaviness, dizziness, lightheadedness, morning headaches; and, renal artery stenosis, celiac artery aneurysm and dissection; and, auditory changes (decreased hearing and discomfort in left ear and visual disturbance on occasion. I was diagnosed @ Mayo following cardiac, vascular, auditory, spine, nephrology, and gastrointestinal consults and tests. I live near Chicago and have trouble putting together a treatment team…conflicting opinions, etc. I miss Mayo given the ease and quality of care that is so well-suited to addressing issues associated with FMD.

@nikarl

A curiosity question- are there support groups for people with FMD to learn more about the condition? Online or in person?

Yesterday I had the carotid ultrasound and no evidence of FMD found- so my focus is renal/iliac. My vascular doctor next has me going to a rheumatologist then an appointment back with him. Right now do not experience any symptoms This was an incidental diagnosis from a hernia condition. Considering a second opinion to get more information but am pleased so far with vascular doctor and he seems good with 6 month/1 year scans to monitor. Any thoughts? Am in NJ, train ride to NYC.

K

Hi @erinmolly, and welcome to Mayo Clinic Connect!

I am not sure if you intended to post. What I read is not a full post so you will want to try again, creating a new comment.

I am glad to see you here. Is there anyway I can help you?

The US organization that spearheads FMD research is FMDSA, with an excellent website and facebook page. The website lists FMD specialists in the US, two key ones being University Hospital in Cleveland, and Mt. Sinai in NYC. There are also specialists and researchers around the world, one center of excellence at the Victor Chang institute in Australia.

Welcome to Mayo Clinic Connect, @ginned!

Is this the Fibromuscular Dysplasia Society of America (FMDSA) website you commented about?
https://www.fmdsa.org/research-network/

Yes.

@lpyne No additional issues with excercise but I am not terribly physically active. I have a forty minute workout about 3 or 4 times a week. Light weights, 5 lbs and some pt recommended excercises for pelvic floor issues. I went for my two year check up recently. Everything was stable. Same cautions about neck manipulation. I did develop stomach ulcers and had to stop the aspirin. So now I do get more headaches and neck pain sometimes. Feeling fortunate that it has not been more of an issue. The ringing in my head never stops. Ugh! Wishing you well.

@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.

Hello @ddiane2026, welcome to Mayo Clinic Connect. This sounds like a long journey to diagnosis and many complications along the way. Were you diagnosed with FMD when you returned to vascular at Mayo Clinic or another clinic? Now that you have received a diagnosis you mention you are not confident in your care and are seeking another opinion at another hospital.

I'd like to tag @parrot53 and @nikarl to jump back into the discussion to talk about how they have managed their FMD and the steps they took after receiving their diagnosis.