Fibromuscular dysplasia (FMD): Want to connect

I just was diagnosed with FMD of renal artery after a CT for something else. Awaiting results of additional CT if head and neck. I live in Rochester and have a consult in Vascular Medicine in October. No symptoms other than my lifetime ones of fatigue, anxiety, tinnitus. I’ve researched everything I can online. Scary as it’s considered rare. It helps to talk with people who have it. Thanks for sharing h.

I hear you ! It’s frustrating to have something rare that is not being backed with funds for research to figure it out. It seems it’s a watch and see disease with a lot of unknowns. Thanks for responding as somehow it helps to feel less alone with this rare disease. Blessings to you on your search for answers and best approaches to your health journey 🙂

Hi, I’m QueenKEB
I believe my Doctor diagnosed me with FMD by way of CTA.
But she haven’t really heard of it!
So she is putting me on a statin and referring me to Vascular.
I am scared and symptoms are swooshing in ear and pain in neck laterally. Lots of aucilar migraines with blurred vision.
Does this sound like something anyone has had?

Hello and welcome. I’m new myself just this week and have received replies to my questions almost immediately.
Your symptoms are being caused by something. Pain is a call from our body that something’s not right. If your doctor isn’t addressing these symptoms and getting to the underlying causes I’d seek another opinion. Sometimes we hesitate with our bodies but that hesitation could lead to other issues.

I’m at my wits end with this… I have literally been checked for cardiac issues, kidney, stomach, neurological… the vascular doctor was a joke. But I will keep moving forward because this can’t be normal to live with.

Welcome to Mayo Clinic Connect. Looks like you have already received comments on your post. Folks on this site are great to share their experiences. May you soon find answers.

That is exactly my plight. I have told the innumerable pain docs over the years, "Look, the principle of cause and effect...I am in severe, chronic pain. That is the effect. There is a cause. Now, it's your job to find the cause.". Each doc just wants to put a band aid on the pain with injections, PT, and who knows what else. So, I say, "How about reaching out to the medical community? Surely someone has had experience with this". Oh, no, they say. I am the expert. I don't need any other doc chiming in. Bah, HUMBUG!

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.

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 🙁

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!