Fibromuscular dysplasia (FMD): Want to connect

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

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

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.

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.

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…

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!

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.

Thank you for the encouragement. I’m new and I feel all alone.

@chanda79, members are talking about Fibromuscular dysplasia (FMD) in the Stroke & Cerebrovascular Diseases Support Group https://connect.mayoclinic.org/group/cerebrovascular-diseases/

Here you can connect with other FMD-ers like @lpyne @123sandy @parrot53 @GratefulEveryDay @kelsi @mom4thelord @queenkeb @caroline58 and others.

I can imagine having had 3 strokes at the age of 45 is scary. Yes, the anxiety is real. What signs and symptoms were you told to watch for?

Hi, from Sweden. I have FMD in both carotid arteries and in the brain, probably in more places.
I am followed up by a doctor at the medical and vascular clinic at my hospital every 3 months (I work as a nurse there). The dialogue takes place in writing in our medical record system, I write down my symptoms and then she assesses whether I need to see her or not.
Despite my X-rays with CT angiography, the degree of stenosis has not been assessed, which would be important for me to know how narrow my vessels are, which shows how quickly the muscle walls grow in my arteries and how soon I can get sick.
No, the medical follow-up is not good in Sweden either. I had a TIA in 2023 and have headaches, ringing ears. pain from my left shoulder all the way up to my ear, especially when I do something.