Fibromuscular dysplasia (FMD): Want to connect
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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I've had the whooshing sound as well & was told that IS a symptom of FMD
This is outrageous! Especially given your history 🙁
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.
Thank you. I didn't notice a comment. Will go back & look.
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.
Also had an MRI/CT (dont remember which) scan of my head & chest & kidneys.
The neck CT/MRI was the determining factor in my case
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?
Yes, healthcare is lacking in many countries, even in my country - Sweden. That's why it's lucky this page exists! There's a lot to read about our disease here. There's a lot of ignorance about our disease among vascular doctors etc. The only contact I've had with a vascular doctor didn't have much knowledge of the disease.
I think tinnitus is common with our disease but we have different sounds depending on whether we have or have had dissection or aneurysm or very narrow carotid artery stenosis.
I have it in the largest artery in the brain and in both carotid arteries but nothing else has been x-rayed so I could have more places. I've had a metallic high-pitched noise for a year that can vary in tone from time to time and sometimes knocks. Pulsatile tinnitus is probably the most common in a dissection where one of the vessel walls ruptures. I'm just now changing health center and doctor and hope for better support than before.
You'll get more answers from others here later but Welcome here!
I didn’t know I had FMD until hospitalized for multiple strokes after chiropractor cracked my neck to alleviate headaches. The right half of my head is still numb.
Also didn’t know that most people do not have ringing in their ears. I thought the whooshing was normal too.