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?

Interested in more discussions like this? Go to the Heart & Blood Health Support Group.

Janell, Volunteer Mentor | @jlharsh | Aug 26 4:29pm

In reply to @chanda79 "I live in FL and have a derm appointment in MN so also trying to see..." + (show)

@chanda79
Wonderful, you have a good opportunity to explore possibilities in MN then.

Do you think you will call to see if Mayo Clinic’s FMD department will be able to help you?

chanda79 | @chanda79 | Aug 25 9:01am

In reply to @jlharsh "Hi @chanda79 I am a Mayo Clinic MN patient, though I do not have experience with..." + (show)

I live in FL and have a derm appointment in MN so also trying to see an FMD specialist there in Nov. Currently in Jacksonville, there’s no 3D camera (for skin cancer tracking) and no FMD specialist that I can find.

Janell, Volunteer Mentor | @jlharsh | Aug 24 3:05pm

In reply to @chanda79 "Has anyone found a Mayo doctor who specializes in FMD?" + (show)

Hi @chanda79
I am a Mayo Clinic MN patient, though I do not have experience with fibromuscular dysplasia.

I found a Mayo Clinic Overview of FD that describes symptoms, treatments, and how their integrative care works. There is a page included listing doctors and departments you may find helpful: https://www.mayoclinic.org/diseases-conditions/fibromuscular-dysplasia/doctors-departments/ddc-20352151
- Make an appointment here: http://mayocl.in/1mtmR63

What Mayo Clinic location are you interested in visiting?

parrot53 | @parrot53 | Aug 22 6:32am

I am sorry to hear that. Hoping for you that they find the cause of your pain. I am dealing with lower quadrant pain and trying to figure out what is causing it. Wishing you well.

caroline58 | @caroline58 | Aug 21 11:37pm

In reply to @parrot53 "I can no longer take low dose aspirin as I developed gastric ulcers probably due to..." + (show)

Same for me right now, no baby aspirin at all this week and probably longer as I had severe abdominal pain this weekend and no statins for my blood fats for a month either, hugs!

welshgirl | @welshgirl | Aug 21 4:35pm

In reply to @chanda79 "My diagnosis was from CTA head/neck, CT of renal and ultrasound of carotid. Does anyone know..." + (show)

👍

chanda79 | @chanda79 | Aug 21 9:50am

Has anyone found a Mayo doctor who specializes in FMD?

chanda79 | @chanda79 | Aug 21 9:47am

In reply to @welshgirl "Thanks! I assume ultrasounds are less expensive than mris but still give the required information?" + (show)

My diagnosis was from CTA head/neck, CT of renal and ultrasound of carotid. Does anyone know what scan they use for coronary/heart?

welshgirl | @welshgirl | Aug 20 6:00pm

Thanks!
I assume ultrasounds are less expensive than mris but still give the required information?

E. Mack | @emack | Aug 20 3:55pm

In reply to @welshgirl "What is the best diagnostic tool for monitoring FMD? MRI? CT Scan?" + (show)

I was diagnosed 4 years ago from an MRI, and just need annual ultrasounds on my carotid and bi-annual on renals.

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