Fibromuscular dysplasia (FMD): What are next steps?

Posted by lpyne @lpyne, May 17 10:06am

I have had 2 neck CT scans and both found MFD- my neurologist states it’s nothing to worry about. In the mean time I have suffered from chronic dizziness, headaches, anxiety symptoms, ringing ears. I have seen a cardiologist, neuro vascular specialist and had a wide variety of tests that all seem normal- except the neck CT. No MFD in renal artery. Curious if I should ignore it like my doctor is telling me or if I should seek a second opinion?

Interested in more discussions like this? Go to the Stroke & Cerebrovascular Diseases Support Group.

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.

REPLY
@heisenberg34

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.

Jump to this post

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..?

REPLY
@lpyne

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..?

Jump to this post

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

REPLY
@heisenberg34

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

Jump to this post

Would highly recommend getting nerve testing done again and check if it’s processed.
I’m more than happy to share the book - I think I can load it here or if you’re comfortable sending me your email I can email it to you directly.

REPLY

Thanks. After I recover from surgery, will try to contact a neurologist here. I would like to look at the book.
oceangrove90@verizon.net

REPLY

Good luck. I will email the book tomorrow.

REPLY
@heisenberg34

Thanks. After I recover from surgery, will try to contact a neurologist here. I would like to look at the book.
oceangrove90@verizon.net

Jump to this post

Good luck! I will email the book tomorrow.

REPLY
@lpyne

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

Jump to this post

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.

REPLY
@lpyne

Good luck! I will email the book tomorrow.

Jump to this post

Thanks. I'll be looking for it.

REPLY

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.

REPLY
Please sign in or register to post a reply.