← Return to Fibromuscular dysplasia (FMD)

SandraH (@sandrah1)

Fibromuscular dysplasia (FMD)

Heart & Blood Health | Last Active: Sep 11, 2019 | Replies (59)

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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.

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Replies to "SUGGESTIONS PLEASE! Going for my first FMD appointment with vascular and neuro specialist on March 7th...."

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?

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!

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

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.