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Fibromuscular dysplasia (FMD): Want to connect

Heart & Blood Health | Last Active: 10 hours ago | Replies (114)

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Profile picture for nikarl @nikarl

@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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Replies to "@parrot53 with my FMD, I experience neck, sinus (left side), occasional chest pain, back pain, leg/calf..."

@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.