Fibromuscular Dysplasia

[livingwith]

I have recently been found to have FMD in my right interior carotid artery. This includes a small and a large aneurysm in the wall of the artery, narrowing and tortuosity.
I was on an estrogen, which may have helped cause this. Now I just take one baby aspirin a day.
It feels a bit like there is a time bomb in my neck. A unfortunate side effect of the stress, for me is over eating.
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[bammaone]

Hi Linda, How did they find the FMD? I too was diagnosed with FMD; I have it in both carotid arteries. They never told me that estrogen could have caused this. I'm on estrogen!!!! Is there any surgeries that can help you? ( They found mine while doing a brain angiogram )
I do have it severly in the iliac artery .. All my Dr said was to keep the blood pressure under control..
I have had a few scares though.
I am so glad I found this forum...it helps ms know that someone understands what is happening. I hope and pray that there is a cure or help out there somewhere. I have my family but there are somedays that I feel totally alone.
It seems somedays as food is always on my mind; and I really don't know why: I guess its because of nerves and wondering when something is going to happen.. We have been to hospital and in the ER and no one seems to know what FMD is.They just ask whats that???
Anyway my thoughts and prayers are with you.. God Bless,Faye

[TrishS]

Overeating is my issue now too, but at times I feel sooo hungry and weak and I think if I eat I will get more energy. Does anyone else feel like that? I try to avoid sweets, but the hunger seems to be there and I don't get the full feeling.

[bammaone]

Trish it's me again ..I too stay hungry and am really putting on weight. Can't believe how much I have gained. Everytime I go to the drs, the scales run up. Now this is the really depressing part. If you find a way to curb the appetite please let me know..Faye

[kptocs]

monitor blood pressure closely at home - in all times of day and in various positions- and remeber FMD can concur in the renal arteries causeing renovascular hypertension - this would be a bad combination if you also have the FMD and anneurism in your ICA

[Lorraine8]

I'm wondering if I, too, have FMD. In August of 2008, an ultrasound found 59% stenosis in my right carotid artery. The doctor is treating me as if I have plaque (fish oil, aspirin, Lipitor), but now I'm not sure. Could the doctor actually see that your stenosis (narrowing of artery) was caused by FMD rather than plaque? Can they tell the difference??
Lorraine

[kptocs]

Hi Lorraine - maybe you can get a disc of the carotid artery ultrasound / doppler - and get a second opinion on it's reading. I'd see if you can send it to some one who sees a lot of the tests of FMD'rs - Like dr. Olin at Mt. Sinai in NY - he actually asked me to repeat my original dopplers. The first ones were done wrong so they were read wrong. When they were done right he found it in my internal carotids.

I guess another idea is I thought athlerosclerosis might impact both arteries to some extent. also if you had FMD and had a dissection it could heal spontaneously, causing an area of "scar" that could look like stenosis or a plaque.

Do you have renal artery stenosis as well? if you do, and you are younger than 50 with no significant risk factors for athlerosclerosis it would be worth while to see some one who could figure this out...

AS I understand it - many of the FMD arteries look like a string of beads - especially in the renals.

There is a simple blood test for renovascular hypertension. It is the ratio of renin to aldosterone (i think) and if it is high you may have renal artery stenosis.

I'd suggest beginning by requesting copies of all reports aof all lab tests, blood work and copies of any MRI or exrays or dopplers/ echo's then hand carrying those to other people for second opinions. Just like my case, be open to repeating tests since the technician's skills can vary and thus the readings can vary.

I hope this advice helps - the main centers known for thier epertise include cleveland clinic, and U. illiois and mouunt sinai in NY. That is where I go - I take a whole day off and take the train there from Baltimore - even though i have great care at hopkins, there is more epsertise in FMD at Mt. Sinai.

[Lorraine8]

Wow, thanks so much for all that information! I'll print it out and read it over quite often and one day if I can muster up the energy, I'll take all those steps you listed. What's the status on your condition now and did you have to take medicine for it?
Thanks again,
Lorraine