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Fibromuscular dysplasia (FMD): Want to connect
I have had 2 neck CT scans and both found MFD- my neurologist states it’s nothing to worry about. In the mean time I have suffered from chronic dizziness, headaches, anxiety symptoms, ringing ears. I have seen a cardiologist, neuro vascular specialist and had a wide variety of tests that all seem normal- except the neck CT. No MFD in renal artery. Curious if I should ignore it like my doctor is telling me or if I should seek a second opinion?
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@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.
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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.
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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.