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sandrah1

Fibromuscular dysplasia (FMD)

Posted by @sandrah1 in Heart & Blood Health, Feb 11, 2012

Is anyone aware of ongoing discussions or research regarding Fibromuscular Dysplasia?

melanieangel

Posted by @melanieangel, Dec 6, 2016

I am 57yr old and just got out if the hospital with my 5th stroke in as many years. They finally did a brain angiogram. They have discovered I have FMD. And also a very aggressive migraine disorder. I suffer daily from migraines, yes I said daily, also vertigo multiple TIA's. My first cousin also has it. Anyone else have something close?

colleenyoung

Posted by @colleenyoung, Dec 14, 2016

Hi Melanie, a belated welcome to Connect.
I'm sorry to hear about your repeated strokes, but glad you were finally able to get a diagnosis. Here is further information from Mayo Clinic about fibromuscular dysplasia http://mayocl.in/2ct5hdR

@sandrah1 and @fmdadvocate haven't posted to Connect for a while but I hope they will return to share their experience managing FMD with you, and that this discussion will attract other members who are living with FMD.

Melanie, what treatment or management options have you talked about with your care team?

enoevian

Posted by @enoevian, 2 days ago

SUGGESTIONS PLEASE! Going for my first FMD appointment with vascular and neuro specialist on March 7th. What questions should I ask? Thank you so much, in advance, for your advice!! I'm just kinda lost here and trying to figure things out.

colleenyoung

Posted by @colleenyoung, 2 days ago

Welcome to Connect, @enoevian.
I moved your messages to this discussion about Fibromuscular Dysplasia so you can meet others talking about FMD. I'd like you to meet @kariulrich and @melanieangel who also have FMD. Additionally, I always like to tag @caretothepeople when people ask about preparing question to ask at an appointment. She has great resources to help get you started.

Enoevian, do you already have a confirmed diagnosis of FMD? Is the March 7th appointment to meet your specialist team and prepare for a treatment plan?

enoevian

Posted by @enoevian, 2 days ago

Thank you for the response! I look forward to meeting @kariulrich and @melanieangel and @caretothepeople.
Yes, I already have a confirmed diagnosis. My upcoming appointment is to discuss a treatment plan.
Thank you so much for advice!

kariulrich

Posted by @kariulrich, 1 day ago

Hello @enoevian, nice to meet you! Sorry it took me a while to respond... I have the flu :(. So as far as questions to ask, really depends on if FMD been confirmed and where is the disease located? If you have vertebral or carotid FMD you should be checked for brain aneurysms. Some FMD Clinics are now suggesting all patients should have head to toe imaging at least once. Ask your physicians how many FMD patients they have, this is especially important if any procedures will be done. May I ask where you are going for care? I have widespread FMD and have been diagnosed for many years. Please let me know if I can help in anyway. - Kari

kariulrich

Posted by @kariulrich, 1 day ago

Sorry just seen this second message, so FMD is confirmed... So I am guessing you have had symptoms? The treatment really depends on the area of FMD, and if there has been any damage. Most dissections if small will heal on their own, others require more intensive treatment. Aneurysms, are another ball game so to speak. I have small aneurysms, so I just have them monitored by MRI/MRA- I have been lucky they have been stable. Most of the time a baby aspirin is given, but it really depends on the patient. Don't get frustrated if they say... lets wait and see.... that is a pretty common treatment, LOL! Frustrating but common. It really depends on the severity of the stenosis and if you have had any events.

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