Fibromuscular dysplasia (FMD): Want to connect

I have had a TIA that affected my speech and impaired my memory, speech came back but not my memory. Unsteady when I walk.
I have numbness in my entire face and in my lower legs and arms that become icy cold later in the day. Headaches daily.
How are you feeling now?

Yes, healthcare is lacking in many countries, even in my country - Sweden. That's why it's lucky this page exists! There's a lot to read about our disease here. There's a lot of ignorance about our disease among vascular doctors etc. The only contact I've had with a vascular doctor didn't have much knowledge of the disease.
I think tinnitus is common with our disease but we have different sounds depending on whether we have or have had dissection or aneurysm or very narrow carotid artery stenosis.
I have it in the largest artery in the brain and in both carotid arteries but nothing else has been x-rayed so I could have more places. I've had a metallic high-pitched noise for a year that can vary in tone from time to time and sometimes knocks. Pulsatile tinnitus is probably the most common in a dissection where one of the vessel walls ruptures. I'm just now changing health center and doctor and hope for better support than before.
You'll get more answers from others here later but Welcome here!

I didn’t know I had FMD until hospitalized for multiple strokes after chiropractor cracked my neck to alleviate headaches. The right half of my head is still numb.

Also didn’t know that most people do not have ringing in their ears. I thought the whooshing was normal too.

I first experience transient greyed out vision in 2011 after a chiropractor used a ProAdjuster very hard on both sides of the back of my neck. Since then I have had worsening reoccurences about every 3 years - sometimes in the right eye and other times in the left. I usually starts when I bend over move my neck forward and then stand up with some backward head motion. Following the initial incidence, the transient vision disturbance happen frequently and with any particular head movement for about 2 weeks.
CT Scans and head/brain MRIs did not show anything. In 2020 a 4 vessel cerebral angiogram taken at Duke University did show Fibromuscular Dysplasia (FMD) in my right carotid and both vertebral arteries and I was put on baby aspirin - I was able to go 5 years without any episodes.
However on 6/12/2025 I was pulling something stuck on the bottom shelf of the refrigerator out and had another series of episodes, which have slowed down but do not seem to be stopping.
I have been to Duke, MUSC, Dr Bruce Gray an FMD vascular doc in Greenville, SC - but now am getting on in age trying to find a local doctor in my area where there aren't any large hospitals or FMD expertise.
I was wondering if anyone else with FMD transient vision loss had found anything helpful - would love to hear your experiences.
Thank you

The specialist is the only one who accepts my diagnosis, it seems.
I can see if I can get other help directly through the Vascular Clinic instead. Thanks for the advice, sometimes you give up, but I will write there via our medical record system, thanks again!⚘️

Slightly unsteady, sometimes slips when I walk fast, had worse problems in August.
Thanks for the question, since January I have had hot flashes at night, pain problems, a slight fever sometimes, daily pain on the left side of the neck from shoulder to ear, icy cold hands and one leg sometimes but daily, eye pain, increased headaches and the worst nausea around the clock.

Hi, @kelsi - you've had a significant diagnosis with the FMD in the past few weeks, and I see you've also had some major brain surgeries in the past. I'm sorry to hear you have to wait a 10 months to see the vascular neurologist. Just wanted to check in and see how you are doing?

What’s the vascular surgeon saying? I will see my first vascular surgeon next Tuesday and I am so nervous. Thank you!

Second opinion!

I think we all feel abandoned, alone with our FMD and far too poor follow-up by doctors and with X-rays. Hugs!!