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Fibromuscular dysplasia (FMD): Want to connect

Posted by lpyne @lpyne, May 17, 2024

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 | @parrot53 | Jul 1 6:15am
In reply to @ddiane2026 "@jlharsh I'm newly diagnosed with FMD and looking for a specialist to help manage my care...." + (show)
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@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.

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@ddiane2026 hello, I was diagnosed with FMD of the carotid arteries about four years ago. Seen on an MRI when investigating aura migraines. I was put on daily low dose aspirin but developed ulcers due to other issues and no longer take aspirin. I don’t have any of the issues you mentioned so I have no experience with that. I did run across the FMDSA when researching. Perhaps you could seek out one of their centers as they are part of a network specializing in FMD and gathering data to help patients. They have a website for more patient information here
https://www.fmdsa.org/patient-support/
Best of luck to you.

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mariah2026 | @mariah2026 | 4 hours ago
In reply to @cyndiho "I was just diagnosed with FMD and going for first appt with Vascular Surgeon next week..." + (show)
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I was just diagnosed with FMD and going for first appt with Vascular Surgeon next week
Diagnosis from going to Primary Card Dr for hernia and sharing constipation concerns had a CT with dye and they found this..
I have high blood pressure and am on a STATIN but
I don't have any other symptoms, am athletic, normal weight 68 year old female NYC area.
Any guidance, suggestions, from your experiences appreciated.

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@cyndiho I just got diagnosed and I'm also 68. It was discovered when I had a series of horrific head aches and the ER ran a CTA--its in my carotid arteries. I noticed you said you were active and athletic and wonder if your doctor has said you have to stop your activity. Before this happened--I was doing a morning mile on my treadmill at a fast clip most days--- I really enjoy this and now wondering whether I will be able to do this again. I have yet to speak with a vascular surgeon but I am having high blood pressure. Thanks for any insights, Maria

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