Fibromuscular dysplasia (FMD): Want to connect

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

Second opinion!

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

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?

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.

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!⚘️

Is it a given they put you on a stati? What are the odds of a second TIA?

I also have FMD and was given Lipitor after my strokes due to dissected vertebral artery. After a few months it healed and vascular said stop Lipitor bc I never had cholesterol problems prior. Neuro allowed me to stop Plavix. I’m still on aspirin daily. Make sure you go in for checkups and ALWAYS remind every doctor that you have FMD

Thank you for responding. Under Balanced vertebral here were the comments :arteries supply a normal basilar artery. Also said: no focal stenosis or dissection. Balanced vertebral arteries. Most of my blood numbers were really good. My cholesterol shot up and went crazy. I know that can happen when your blood pressure goes sky high. It was 209....I guess I freaked out. It is usually 120/70. I am almost 79 and still work out 5 days a week and do weights 3 times a week. Keep my weight pretty good, but decided there are things I need to go back to like the Mediterranean diet and could stand to lose about 10 lbs. Thanks again for your information.

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