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.

caroline58 | @caroline58 | Jul 20 7:27am

In reply to @queenkeb "Hi, I’m QueenKEB I believe my Doctor diagnosed me with FMD by way of CTA. But..." + (show)

My FMD was discovered a year ago in the emergency room where I went because of 2 severe rotational vertigo attacks when it was spinning so fast that I couldn't walk and just vomited for 8-12 hours. A CT angiogram showed it in my neck vessels but also in the cerebral artery, no further examination of other vessels was done.
My symptoms after that are a howling tinnitus, slightly unsteady when I walk, numbness in the face, headache pressure over the forehead, eye pain, poor memory which I also had after my TIA in 2023. Now I'm going to have my liver and abdominal aorta examined.
None of my doctors I've had have known anything about it but my last one read about it on the computer anyway. FMD is a rare disease and in my country there is no FMD group so I'm grateful I get to be here.

caroline58 | @caroline58 | Jul 20 7:04am

In reply to @chanda79 "I have FMD also. The anxiety is real. I had 3 strokes at 45. Please keep..." + (show)

Mayo clinic has a group for those of us with FMD that I joined last year.

dmwheaton | @dmwheaton | Jul 14 9:54am

In reply to @chanda79 "I didn’t know I had FMD until hospitalized for multiple strokes after chiropractor cracked my neck..." + (show)

I've had the whooshing sound as well & was told that IS a symptom of FMD

dmwheaton | @dmwheaton | Jul 14 9:51am

In reply to @kelsi "Just found out i have FMD in both carotid arteries with a dissection in my left...." + (show)

This is outrageous! Especially given your history 🙁

dmwheaton | @dmwheaton | Jul 14 9:49am

In reply to @caroline58 "Hi, from Sweden. I have FMD in both carotid arteries and in the brain, probably in..." + (show)

So sorry you are experiencing this & you are a nurse, so far more knowledgeable (medically) than most.

After reading your post, I am more scared than ever.

dmwheaton | @dmwheaton | Jul 14 9:43am

In reply to @sbrown293 "Welcome to Mayo Clinic Connect. Looks like you have already received comments on your post. Folks..." + (show)

Thank you. I didn't notice a comment. Will go back & look.

dmwheaton | @dmwheaton | Jul 14 9:42am

In reply to @lpyne "I’m at my wits end with this… I have literally been checked for cardiac issues, kidney,..." + (show)

Same here & it's very frustrating.

Different specialists, different scans, different results.
Six months ago it diagnosed then ruled out & recently it was ruled back in.

They also found a small aneurism in addition to the FMD... the clock continues clicking as the condition likely continues to worsen as I am being passed around from one specialist to another.

dmwheaton | @dmwheaton | Jul 14 9:35am

Also had an MRI/CT (dont remember which) scan of my head & chest & kidneys.

dmwheaton | @dmwheaton | Jul 14 9:33am

The neck CT/MRI was the determining factor in my case

caroline58 | @caroline58 | Jul 2 4:02pm

In reply to @chanda79 "I didn’t know I had FMD until hospitalized for multiple strokes after chiropractor cracked my neck..." + (show)

I have had a TIA that affected my speech and impaired my memory, speech came back but not my memory. Unsteady when I walk.
I have numbness in my entire face and in my lower legs and arms that become icy cold later in the day. Headaches daily.
How are you feeling now?

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