Fibromuscular dysplasia (FMD): Want to connect

Mayo clinic has a group for those of us with FMD that I joined last year.

My FMD was discovered a year ago in the emergency room where I went because of 2 severe rotational vertigo attacks when it was spinning so fast that I couldn't walk and just vomited for 8-12 hours. A CT angiogram showed it in my neck vessels but also in the cerebral artery, no further examination of other vessels was done.
My symptoms after that are a howling tinnitus, slightly unsteady when I walk, numbness in the face, headache pressure over the forehead, eye pain, poor memory which I also had after my TIA in 2023. Now I'm going to have my liver and abdominal aorta examined.
None of my doctors I've had have known anything about it but my last one read about it on the computer anyway. FMD is a rare disease and in my country there is no FMD group so I'm grateful I get to be here.

Keep in mind that even though we have the same disease, we are affected differently by it! I am 67, had a herniated disc and vertebral compressions since I was 8 years old, now 67, I have always lived a very active life anyway!
Don't assume that the disease will worsen quickly, often it goes slowly. I work full time as a nurse with an hour's commute one way. These sayings are good,;
♡ Dream of tomorrow. Remember yesterday. Live today!
♡ Don't forget to Live,
the day that passed
Will not come again.

Yes, I believe so too❤️

Thanks for the question!
My vertigo has been unchanged for a year, if I close my eyes I can't walk, always slightly unsteady, always looking at the ground, still walking fast but prepared to stop.
I have changed doctors for the 3rd time in 2 years that I feel safe with, the only time in a year that someone has examined me and taken blood tests other than in the emergency room. I am waiting for an abdominal ultrasound for suspected abdominal aortic aneurysm and have a liver inflammation.

How do we join? I asked neurology about an FMD group and they didn’t have any info.