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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moya | @moya | Jul 26 6:14am

In reply to @chanda79 "How do we join? I asked neurology about an FMD group and they didn’t have any..." + (show)

I’ve just been diagnosed with SCAD and FMD
I’m 79 years age
I feel well and am very active
I’m very concerned to know about living with this if I can’t live with it!

chanda79 | @chanda79 | Jul 20 5:20pm

In reply to @caroline58 "Mayo clinic has a group for those of us with FMD that I joined last year." + (show)

How do we join? I asked neurology about an FMD group and they didn’t have any info.

caroline58 | @caroline58 | Jul 20 8:22am

In reply to @lisalucier "I wanted to check in with some of you to see how things are going. @ellerchim..." + (show)

Thanks for the question!
My vertigo has been unchanged for a year, if I close my eyes I can't walk, always slightly unsteady, always looking at the ground, still walking fast but prepared to stop.
I have changed doctors for the 3rd time in 2 years that I feel safe with, the only time in a year that someone has examined me and taken blood tests other than in the emergency room. I am waiting for an abdominal ultrasound for suspected abdominal aortic aneurysm and have a liver inflammation.

caroline58 | @caroline58 | Jul 20 7:54am

In reply to @caroline58 "I think we all feel abandoned, alone with our FMD and far too poor follow-up by..." + (show)

Yes, I believe so too❤️

caroline58 | @caroline58 | Jul 20 7:49am

In reply to @dmwheaton "So sorry you are experiencing this & you are a nurse, so far more knowledgeable (medically)..." + (show)

Keep in mind that even though we have the same disease, we are affected differently by it! I am 67, had a herniated disc and vertebral compressions since I was 8 years old, now 67, I have always lived a very active life anyway!
Don't assume that the disease will worsen quickly, often it goes slowly. I work full time as a nurse with an hour's commute one way. These sayings are good,;
♡ Dream of tomorrow. Remember yesterday. Live today!
♡ Don't forget to Live,
the day that passed
Will not come again.

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.