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.