Fibromuscular dysplasia (FMD): Want to connect

I was told the same thing. I have carotid artery FMD with no renal artery problems. I take a daily 81 mg aspirin to thin the blood to prevent stroke and have been told, after one annual checkup to make sure carotid arteries were stable, that 2 years would be my next follow up visit with the neurologist. I do have persistent ringing in my ears, neck pain sometimes, and lightening like headaches. No balance or dizziness though. The aspirin helps my headaches. Wishing you the best. Please keep us posted if you get any more information.

Lower back, both buttock cheeks, now add hips, back of thighs to back of calves to ankles and feet. More recently it seems to be spreading upward between my shoulder blades. I am now on doxy for Lyme's since I tested positive (although I've had Lyme's before so it's hard to tell if it's an ongoing infection.

I believe that I had an emg study done back in 2017 by the neurologist who prescribed the cocktail of drugs that helped with my nerve pain. Who can remember back that far? I can barely remember what I did yesterday. I have been trying to hook up with a new neurologist here in our new city. Easier to get an audience with the pope.
Yes, the book might be helpful. You never know where nuggets may come from, besides McDonalds. lol. Thanks

Curious if you have ever had a nerve study done? I work for a PT that is a spine specialist and we have seen these studies to be helpful. Even if your Doctor tells you otherwise…. 🙂 maybe I could send you a book written by him that may have a few nuggets of good info..?

Originated in lower back and buttocks after a ski fall in 2016. Pain was well managed with meds and spinal cord stimulator until 2021 when all pain returned. Now pain radiates down the back of my legs and into ankles and feet.

I’m curious where does your pain stem from? Back? Feet?

Yes, pain rules my mind every waking hour. I tried doing some recommended exercises only to have my pain ramped up even worse. I can't even walk around our communty with my wife. A short walk of a couple hundred yards sends the bottom of my feet into severe burning mode. I am getting my old, non-functional spinal cord stimulator removed this coming Monday. Then, I will be able to finally get an MRI and, hopefully, find out what's going on with my back.

Chronic pain in the absolute worst thing when nothing seems to help.
you must be your own advocate- seeking second opinions. I can’t imagine that any doctor would think it’s normal for me to be dizzy 24/7 and nothing helps. And then to be diagnosed with fibromuscular dysplasia on 2 different CT scans - only for them to say “it’s not blocking blood flow to your brain so your fine” ignore it…. Wow! Let me just ignore that until I have a stroke or worse 🙁
Now I’m going to doctors that specialize in dizziness and getting those second opinions.
I’m also being my own advocate and getting back in shape physically and emotionally. Some days it’s impossible.. but I do it anyway because in the end every little bit helps. You can do this! Keep your head up!

So true you must be your own advocate- seeking second opinions. I can’t imagine that any doctor would think it’s normal for me to be dizzy 24/7 and nothing helps. And then to be diagnosed with fibromuscular dysplasia on 2 different CT scans - only for them to say “it’s not blocking blood flow to your brain so your fine” ignore it…. Wow! Let me just ignore that until I have a stroke or worse 🙁

Ah, you have learned that you have to be your own, best advocate. Pain docs and others will not, for the most part, reach out to their fellow wizards for any kind of consultation in regards to your pain unless you are forceful in asking them. Otherwise, keep researching and making appointments to get other opinions. No one else will likely do it for you.