Fibromuscular dysplasia (FMD): Want to connect

Posted by lpyne @lpyne, May 17, 2024

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.

parrot53 | @parrot53 | May 22, 2024

In reply to @lpyne "Also curious if you have any additional issues when you attempt exercise?" + (show)

I also have cirrhosis and degenerative disc disease. I get quite tired but walking and light yoga work for me. I just need to be more consistent with it. I have nerve issues with my left foot and will see a pain specialist for an EMG test soon. I use gabapentin when I really can’t sleep through the leg and foot pain but I would rather see a PT.
My neurologist told me the same thing about craning my neck. It scared me a little. I used to do that when driving all the time.
Thanks for sharing.

parrot53 | @parrot53 | May 22, 2024

In reply to @lpyne "Also curious if you have any additional issues when you attempt exercise?" + (show)

I forgot to say, sorry that you can’t take the aspirin. That really helps with the headaches. I also take a beta blocker due to portal hypertension. I am lucky that I do not suffer from dizziness. Hoping you can find an answer for that.

Colleen Young, Connect Director | @colleenyoung | May 27, 2024

@lpyne, I moved your post to the Stroke & Cerbrovascular support group and the Heart & Blood Health support group. I'm also tagging fellow members like @stpaulpoet52 @queenkeb @geechiegal @jwillits8 @jayhawk57 who have experience with fibromuscular dysplasia (FMD).

If you would like to seek a second opinion at Mayo Clinic, you can submit a request here: http://mayocl.in/1mtmR63

@lpyne, how are you managing your dizziness and headaches?

parrot53 | @parrot53 | May 28, 2024

In reply to @lpyne "Mine is in the same place. And no renal artery issues. It’s so interesting to me..." + (show)

I have been thinking about you. It occurred to me that fish oil or flaxseed oil tablets also thin your blood. Perhaps you could ask your doctor if one or the other might be a good substitute for aspirin since you are allergic to it.

lpyne | @lpyne | May 28, 2024

In reply to @colleenyoung "@lpyne, I moved your post to the Stroke & Cerbrovascular support group and the Heart &..." + (show)

Thank you- I thought I posted on the wrong one but then couldn’t remove it

GratefulEveryDay | @GratefulEveryDay | Oct 2, 2024

I was told I have FMD-fibromuscular dysplasia- in the renal arteries maybe 5 yrs ago, pearl-like arteries, but no symptoms with that really. More concerned about the aortic aneurysm and brain aneurysm and just tortuous arteries. Aortic is 4.4 and possibly surgery would be 'considered' at 4.5 due to FTAAD Connective Tissue (LOX Gene Defect discovered, also) Just work at keeping blood pressure down and scans every 6 months.

caroline58 | @caroline58 | Oct 23, 2024

I have fmd in both carotid arteries, the basilar artery that goes up via the brainstem and one more cerebral artery. Unfortunately, I don't know anything about a possible for me aneurysm or degreed of stenosis, only irregularities in the walls and increased musculature. Getting no answers from follow-up doctors. Am a nurse since 1981, live alone, if I don't have time to raise the alarm, no one will find me, want to plan for my life and my pets but get no answers. Is well read in FMD.
I had several attacks this summer of rotational vertigo, tinnitus, vomiting and imbalance even when watching, when I close my eyes had imbalance since 2015. Had a TIA last year. Has a daily headache, nausea, imbalance, tinnitus in the left but briefly also in the right ear.
Am very tired. When I got my rotation vertigo I couldn't see as it was spinning so fast, crawled to the toilet to vomit could last for 6 hours but the symptoms for 5 days, after the last one I still have all the symptoms. No symptoms before other than imbalance.

stalveymary | @stalveymary | Jan 10 11:35am

I had 2 TIA’s and the only thing they could find was I had FMD. Basically told me to not worry. However with 2 mini strokes shouldn’t I take this more seriously

gloaming | @gloaming | Jan 10 12:22pm

In reply to @stalveymary "I had 2 TIA’s and the only thing they could find was I had FMD. Basically..." + (show)

I hope this doesn't sound indifferent or cold, but it's strictly up to you! You have to live under your skin and behind your eyeballs. You are the one who legitimately, and naturally, would want to improve his/her circumstances when at all possible...no? You are the one to assign any weighting to a condition you have, and to its prognosis for future changes to your life.

Me, I want to control what I can, including a doctor's take on me as a person and as a patient. I learn all I can about a new development, wring it dry to the extent my aging brain can do it, and then present in front of an expert...often months later in our vaunted Canadian 'socialized' medical system. They soon learn that I know at least some of what they understand, both about their craft and science, and about me as a person who pays their bills.

If you are worried about this, and who wouldn't be, then do everything in your power to advance your case and to get it resolved to the extent any one expert practitioner can achieve that for you.

I know nothing about FMD, but if it's at all genetic, there's not a lot you can do. If it's reversible, then I would do what it takes. If it's manageable, I would do all that I could stomach doing if only for the most peace of mind available to me.