I know I never had.
Until November, and now I don't know much more I did, I have seen pictures and read some medical papers.
But I do not know anyone personally who has been dealing with this disease.
I was told it was very rare, but according to lots of new research, it isn't as much rare as it is undiagnosed.
It goes undiagnosed because most people who have it never show any symptoms.
Fibromuscular dysplasia, or fibromuscular dysplasia of arteries, often abbreviated as FMD, is a disease that can cause narrowing (stenosis) of arteries in the kidneys, the carotid arteries supplying the brain, and, less commonly, the arteries of the abdomen.
It tends to occur between 14 and 50 years of age, but it has also been found in children younger than age 14. In one study, women were found to be affected more often than men.
A few thousand cases have been confirmed in the U.S., but some experts believe it affects up to 5% of the population. When presumably healthy kidney donors are screened with X-rays, FMD has been found in close to 4%
There is a site here as well.
In November I had what they called a Heart attack. It lasted under two hours, I was pretty much recovered by the time I got to the hospital. I never needed anything for pain. It was just bloody uncomfortable, and I drove myself to the hospital. (yes. not recommended)
I am only in my 40's, so they wondered what was going on as well.
But after bloodwork they decided to keep me in. Raised triponin levels.
I was sent in to the city for an angiogram. I won't rehash that disaster.It's all here. The only addition I can make to that is I finally had to have surgery at New year's to fix what they did to my femoral artery. Still getting over that.
My heart is "pristine" they said. No plaque, no narrowing, just some weird
"spontaneous dissection" in my heart, a little traily thing where one vessel blew, and one near my kidneys.
It could be FMD, or it could be a weird one off I was told. Right now I am waiting to see a specialist in the city.
No worries, they won't try anything like another angiogram. Some medical opinions say that isn't the proper diagnostic tool for FMD anyway.
Most Dr's do not know much if anything about FMD. (including the specialist that referred me to the disastrous angio)
So. Does anyone here have that diagnosis? How have things turned out for you?
What is the prognosis?
How have you been treated for it?
And has anyone had the "rare" complications from an angiogram?
I hope to get the use of my leg back soon. But Ill tell ya, its majorly depressing. I am not thrilled with the wheelchair, and have gotten a new appreciation for just how hard it is to get around this way. In my town, the sidewalks are atrocious, and it's often a case of you cannot get there from here.