Fibromuscular dysplasia (FMD): Want to connect

I was told I have FMD-fibromuscular dysplasia- in the renal arteries maybe 5 yrs ago, pearl-like arteries, but no symptoms with that really. More concerned about the aortic aneurysm and brain aneurysm and just tortuous arteries. Aortic is 4.4 and possibly surgery would be 'considered' at 4.5 due to FTAAD Connective Tissue (LOX Gene Defect discovered, also) Just work at keeping blood pressure down and scans every 6 months.

I have fmd in both carotid arteries, the basilar artery that goes up via the brainstem and one more cerebral artery. Unfortunately, I don't know anything about a possible for me aneurysm or degreed of stenosis, only irregularities in the walls and increased musculature. Getting no answers from follow-up doctors. Am a nurse since 1981, live alone, if I don't have time to raise the alarm, no one will find me, want to plan for my life and my pets but get no answers. Is well read in FMD.
I had several attacks this summer of rotational vertigo, tinnitus, vomiting and imbalance even when watching, when I close my eyes had imbalance since 2015. Had a TIA last year. Has a daily headache, nausea, imbalance, tinnitus in the left but briefly also in the right ear.
Am very tired. When I got my rotation vertigo I couldn't see as it was spinning so fast, crawled to the toilet to vomit could last for 6 hours but the symptoms for 5 days, after the last one I still have all the symptoms. No symptoms before other than imbalance.

I had 2 TIA’s and the only thing they could find was I had FMD. Basically told me to not worry. However with 2 mini strokes shouldn’t I take this more seriously

I hope this doesn't sound indifferent or cold, but it's strictly up to you! You have to live under your skin and behind your eyeballs. You are the one who legitimately, and naturally, would want to improve his/her circumstances when at all possible...no? You are the one to assign any weighting to a condition you have, and to its prognosis for future changes to your life.

Me, I want to control what I can, including a doctor's take on me as a person and as a patient. I learn all I can about a new development, wring it dry to the extent my aging brain can do it, and then present in front of an expert...often months later in our vaunted Canadian 'socialized' medical system. They soon learn that I know at least some of what they understand, both about their craft and science, and about me as a person who pays their bills.

If you are worried about this, and who wouldn't be, then do everything in your power to advance your case and to get it resolved to the extent any one expert practitioner can achieve that for you.

I know nothing about FMD, but if it's at all genetic, there's not a lot you can do. If it's reversible, then I would do what it takes. If it's manageable, I would do all that I could stomach doing if only for the most peace of mind available to me.

@stalveymary @gloaming -
https://my.clevelandclinic.org/health/diseases/17001-fibromuscular-dysplasia-fmd

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

@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. 😊

In the early 70's, my maternal grandfather passed due to an aortic aneurysm, it was deemed a genetic issue, for all of his children to be checked. At least 3 of his daughters had this and 2 had it repaired. The one who did not, also died.This week my oldest daughter, 7 months post brain surgery to clip an aneurysm that was leaking had a angiogram that found a new aneurysm near the old site and was diagnosed with FMD (also a genetic component). Now my mind goes to - "Are these two related ?"Without the entire medical info from over 50 years ago, can we connect this not ? I have 3 other children, 10 grands- not to mention my own siblings and their children.

FMD can affect carotid arteries and can cause a stroke due to aneurysm. Here is some information.
https://www.mayoclinic.org/diseases-conditions/fibromuscular-dysplasia/symptoms-causes/syc-20352144
https://www.hopkinsmedicine.org/health/conditions-and-diseases/fibromuscular-dysplasia-fmd
Glad you are researching to find answers.

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?