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 Stroke & Cerebrovascular Diseases Support Group.

Teresa, Volunteer Mentor | @hopeful33250 | Jan 10 3:07pm

In reply to @rashida "@stalveymary @gloaming - https://my.clevelandclinic.org/health/diseases/17001-fibromuscular-dysplasia-fmd" + (show)

Thanks for the link to CC's website, @rashida. It was a great explanation. Do you have FMD?

rashida | @rashida | Jan 10 6:31pm

In reply to @hopeful33250 "Thanks for the link to CC's website, @rashida. It was a great explanation. Do you have..." + (show)

@hopeful33250 no, I don’t, but when someone writes about a condition/treatment and wants to know more, I look for a relatable. article/link . lol. In the process, Imlearn something too. 😊

Lisa Lucier, Moderator | @lisalucier | Feb 18 10:32am

I wanted to check in with some of you to see how things are going.

@ellerchim - how are you doing? How are things with your eyesight?

@queenkeb - You'd mentioned having swooshing in your ear and pain in your neck laterally, plus migraines and blurred vision. How are your symptoms?

@caroline58 - how is the vertigo lately?

tainan | @tainan | Feb 20 1:06pm

In reply to @caroline58 "I have fmd in both carotid arteries, the basilar artery that goes up via the brainstem..." + (show)

MRA is the test for aneurysm. You seem to have some of symptoms for aneurysm, like headaches and dizziness.
I had those symptoms in 2022 and saw 8 doctors. It was number 8 doctor who is neurologist ordered MRA test to diagnose my aneurysm.
Tainan

tainan | @tainan | Feb 21 1:08pm

In reply to @tainan "MRA is the test for aneurysm. You seem to have some of symptoms for aneurysm, like..." + (show)

My BA was 4.2mm in 2022. I control my BP with medication, eat low salt diet, elevated the bed to 45 degrees when I sleep and do aquatic exercise to prevent blood upflown into BA. It is working my MRA was done in 7/24 and the results is my BA stable in size and not remarkable.
I hope this information is helpful to you. Good luck.
Tainan

ellerchim | @ellerchim | Feb 24 12:39pm

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

My myopic degenerative disease in my left eye, which also had a stroke is gradually getting worse. Now I’m getting injections almost every month. The eye itself got a little bit better where I have some vision, but there’s so much scarring on there. It will never come. Scelaro lenses have helped helped But just a little. No I have degenerative disease in my good eye at 73. I can only hope and pray that I’ll have some vision until the end.

kelsi | @kelsi | Feb 24 8:39pm

Just found out i have FMD in both carotid arteries with a dissection in my left. Already had brain surgery to remove a huge meningioma and brain surgery to remove a vestibular schwannoma. Am now deaf on the right side. Still have 1 meningioma in my head. Life is not easy. I love being a walking ticking time bomb. Also, I have to wait for 10 months to see a vascular neurologist. I'll probably be dead by then.

chanda79 | @chanda79 | 3 days ago

I have FMD also. The anxiety is real. I had 3 strokes at 45. Please keep requesting an FMD support group. Mayo has not been supportive yet…

chanda79 | @chanda79 | 3 days ago

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

I have FMD also. The risks and anxiety are real. I had 3 strokes at 45. When will Mayo start an FMD support group? Thanks!

mom4thelord | @mom4thelord | 1 day ago

Look for another doctor and look again and again until you find a doctor who can treat this disease.
I have the exact same symptoms. I feel like I’m going crazy. Now on this sight (first day) I feel a litter better just knowing that others have the same thing. I see my vascular surgeon for the first time tomorrow. Hoping he can help. The problem with FMD is that there doesn’t seem to be any doctors that specialize in FMD. I’ve had to make a lot of phone calls to find this doctor. I hope he will be able to treat it. I’m sorry say that a lot of vascular surgeons don’t know enough about it to treat it.