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?

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parrot53 | @parrot53 | Aug 11 5:34am

In reply to @cyndiho "Very curious on the omega 3 What was the interaction issue?" + (show)

@cyndiho omega 3 is also a blood thinner. See article https://www.nccih.nih.gov/health/tips/things-to-know-about-omegas-for-heart-disease

jdgarc | @jdgarc | Aug 11 7:49am

In reply to @cyndiho "Very curious on the omega 3 What was the interaction issue?" + (show)

@cyndiho
Most likely culprits (from my list)

Niacin (600 mg): very commonly causes flushing, warmth/redness, head pressure, nausea, itching, and sometimes dizziness, especially when taken without appropriate formulation/with food timing that triggers a stronger response. (Headache right after dosing fits well.)
Ginkgo (120 mg): can cause dizziness/headache in some people. More importantly, ginkgo can increase bleeding tendency, which becomes a concern if you’re also taking aspirin (or any blood thinner).
Omega 3 Krill oil: usually less likely to cause immediate dizziness, but it can contribute to lightheadedness in some people; also can add to bleeding tendency with aspirin.

jdgarc | @jdgarc | Aug 11 8:03am

In reply to @jdgarc "@cyndiho Most likely culprits (from my list) Niacin (600 mg): very commonly causes flushing, warmth/redness, head..." + (show)

@cyndiho
I forgot to mention since i am also in the aspirin regime which is a blood thiner, omega 3 also acts as a blood. If you are in the aspirin regime please consult with your doctor and make sure that you give him the list of all the supplements you are currently taking.

shellybrown66 | @shellybrown66 | Aug 22 10:22am

Hi, I am a 60 yr old female that was diagnosed with FMD 3 years ago after a spontaneous brain bleed. I experienced most of what you have all experienced - vague responses, blank stares, medical charts listing it as fibromyalgia myalgia and just plain being blown by vascular surgeons. I am on aspirin 1x a day, a low dose of statin, and demand to see a vascular surgeon every 6 months. I have chronic migraines, dizziness, a small dissection of the carotid artery, and a splenic aneurysm , whooshing sounds in my left ear and chronic fatigue. Now, I just discovered that it has moved on to my renal arteries which is causing thickening of the wall of my heart. The Vascular surgeon missed this diagnosis - I found it in the summary of a report after experiencing heart issues for the first time in my life. I go back to see him in a week or two. You definitely have to advocate for yourself, keep trying to find a GP that truly listens and get referred to the specialists that I and everyone else on here has mentioned. Do any of you suffer from any other autoimmune disorders?

parrot53 | @parrot53 | Aug 23 6:25am

Probably a silly question,but have you seen a neurologist? I also found this online. Perhaps it can help you find a doctor with FMD experience.
https://www.fmdsa.org/

shellybrown66 | @shellybrown66 | Aug 23 7:31pm

In reply to @parrot53 "Probably a silly question,but have you seen a neurologist? I also found this online. Perhaps it..." + (show)

@parrot53 Thank you for this information!

I have seen a neurologist and do so once a year.

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