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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)
Profile picture for ddiane2026 @ddiane2026

@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 | Jul 8 11:27pm
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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cyndiho | @cyndiho | Jul 9 7:55am
In reply to @mariah2026 "@cyndiho I just got diagnosed and I'm also 68. It was discovered when I had a..." + (show)
Profile picture for mariah2026 @mariah2026

@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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@mariah2026 good morning. No he didn’t restrict my activity. He has me monitoring blood pressure, taking baby aspirin and 6 month scans. See what your vascular surgeon recommends. I do 1 hour on elliptical, walk 2 miles or swim 3K yards most days.

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cabgreenbay | @cabgreenbay | Jul 11 9:12am

My cardiologist at Mayo said I have FMD. I reported having double vision, thumping in ear and dizziness at times. He suggested I see an ophthalmologist for the double vision so he didn’t really seem too concerned himself.

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parrot53 | @parrot53 | Jul 12 8:19am

Sounds like the double vision is a separate issue. But thumping and ear ringing and dizziness may be related. I have FMD also and experience both. Less dizziness but constant ringing in my ears and hearing my heartbeat also at times. Aren’t we having fun! Have a great day.

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mariah2026 | @mariah2026 | Jul 13 2:29pm
In reply to @cyndiho "@mariah2026 good morning. No he didn’t restrict my activity. He has me monitoring blood pressure, taking..." + (show)
Profile picture for cyndiho @cyndiho

@mariah2026 good morning. No he didn’t restrict my activity. He has me monitoring blood pressure, taking baby aspirin and 6 month scans. See what your vascular surgeon recommends. I do 1 hour on elliptical, walk 2 miles or swim 3K yards most days.

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@cyndiho Thanks so much for this info! It's reassuring. I still haven't seen my vascular surgeon says but I am wanting to know that I can keep doing my treadmill.

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mariah2026 | @mariah2026 | Jul 13 2:35pm
In reply to @parrot53 "@lpyne No additional issues with excercise but I am not terribly physically active. I have a..." + (show)
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@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.

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@parrot53 I'm glad to hear you can still exercise. I had been using my treadmill each morning to get 1 Mile at a good clip (3.5 - 3.8 MPH) and that was such a helpful thing to keep me sane. My FMD was found last weekend --due to a massive headache---and I have it in my carotid arteries. I'm navigating getting to the specialists that can help look at this and so I've stopped it for now and started taking my baby aspirin. I am beginning to think I've had this for a while... I have been hearing my heart beat in my ears for a while and I've had weird sensations in my neck--a tightness under the jawline which I was attributing to wrinkles! Wishing you well!

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cyndiho | @cyndiho | Jul 14 6:59am
In reply to @mariah2026 "@parrot53 I'm glad to hear you can still exercise. I had been using my treadmill each..." + (show)
Profile picture for mariah2026 @mariah2026

@parrot53 I'm glad to hear you can still exercise. I had been using my treadmill each morning to get 1 Mile at a good clip (3.5 - 3.8 MPH) and that was such a helpful thing to keep me sane. My FMD was found last weekend --due to a massive headache---and I have it in my carotid arteries. I'm navigating getting to the specialists that can help look at this and so I've stopped it for now and started taking my baby aspirin. I am beginning to think I've had this for a while... I have been hearing my heart beat in my ears for a while and I've had weird sensations in my neck--a tightness under the jawline which I was attributing to wrinkles! Wishing you well!

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see your vascular surgeon for guidance I have an appointment with a specialist in nyc in Aug in addition to local vascular surgeon My FMD is renal and iliac not carotid. I also guess have had a while as symptoms are blood pressure for me. Hopefully good news when you see your vascular doctor

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jdgarc | @jdgarc | 6 days ago

I was diagnose with FMD over a month ago while on the ER. Had a CT scan an boom that was my diagnose.
A week later they sent me an email saying that they found a possible pseudo aneurism in the ct scan.
Two weeks later i had a Cerebral Angiogram.
I had to wait over two weeks for my results.
In the mean time i had to live with daily headaches, dizziness, and depression because of these daily episodes.

I decided to do some research by inputing all my variables meaning; my diagnose, all the medications I was currently taking (aspirin regime, blood pressure, and cholesterol med).
Then i added all my vitamins and supplements i took daily with my breakfast.
Well, to my disbelieve some of the supplements that I was taking were interfering with my aspirin routine, and some with my blood pressure med. Example Omega 3 Krill, ginkgo biloba 120 mg, niacin 600 mg, and beet root supplements.

I started an experiment and I stop all those supplements at once. Oh boy good bye headache and dizziness. I know that I have to live with this FMD but I at least those daily headaches and dizziness are gone.
I still has to deal with other changes I have to make in my life, like my work outs are less intensive.
Also, changes to my diet and other things that I took for granted and enjoy but now i have to do without it.
I hope that this post helps some people that are also navigating through this.

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cyndiho | @cyndiho | 5 days ago

Very curious on the omega 3
What was the interaction issue?

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