Fibromuscular dysplasia (FMD): Want to connect

What is the best diagnostic tool for monitoring FMD?
MRI? CT Scan?

We take low-dose aspirin because we have a high risk of stroke with both blood clots in the brain and carotid arteries and other places due to our curved vessels that become narrow-dilated-narrow-dilated and the vessel walls risk getting "cracks" that cause bleeding and are called a pearl necklace appearance on X-rays because it repeats itself along our large blood vessels - the arteries - in different lengths.

FIBROMUSCULAR DYSPLASIA My legs are just hurting all the time. Any ideas ? This new for the past year just on water pills, Entresto . My legs are alway leaking. What more can I do?

I also have been diagnosed with FMD in both carotid arteries and no renal artery involvement. I have serious ringing in my ears and sometimes pain in my neck and left sinus with some chest pain at times. My neurologist says the neck and chest pain are not caused by FMD but I am not sure that is the case. I will see him again after two years has passed. Has anyone else with FMD experienced the neck, sinus, or chest pain?

FIBROMUSCULAR DYSPLASIA My legs are just hurting all the time. Any ideas ? This new for the past year just on water pills, Entresto . My legs are alway leaking. What more can I do?

Thank you for your kind reply. I don’t take the aspirin any more unless I get chest pains which I will discuss with my doc. Same with lifting, bending too. Just taking it all in stride as my body ages. I consider myself truly lucky to have made it this far. Every day from here on out is a bonus to be appreciated. Best to you and it is great that you got to go to India. Wow! and, got help there too. It is good to know you are there and experiencing similar circumstances. 😊

Hello:)
I also have FMD in my carotids (and vertebral arteries) and have suffered from neck pain. I have ringing in my ears as well as pulsative tinnitus and headaches. No chest pain but I was having palpitations for some time. I also have idiopathic intracranial pressure(pressure in my skull and face and around my ears). My Drs in Colorado have given me the advice to have annual scans and do the aspirin regimen but I felt alone and scared regardless of this wait and see approach. They didn’t help my neck pain or head pressure. I’ve been seeing an Ayurvedic Dr in India who has helped me a lot with reducing my stress and anxiety which has helped me tremendously. She has also been able to help me manage my neck pain and head pressure through treatment. I no longer have severe headaches or neck pain and the pressure in my head has reduced greatly. I feel reduced pressure in my whole body actually. She also gave me the order to rest and lead a simple life as I can and not to lift heavy things, not to bear down(during a bowel movement for example) and no bending over(for my head pressure). I tell you this not so you’ll take off to India or anything(I’m
in no way trying to give medical advice!) but to say that there may be someone out there who can help you in the ways you need. I know this is a lot of info but in case it helps I thought I’d include more context. I think if it would help you feel more comfortable getting more medical opinions with regard to your neck pain, sinus and heart, then please know it’s ok to consider that. It can be very confusing, scary and hard coming to terms with disease and the nuances of our individual bodies. Please know you are not alone. I hope this helps:)