Fibromuscular dysplasia (FMD)

Posted by SandraH @sandrah1, Feb 11, 2012

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

Interested in more discussions like this? Go to the Heart & Blood Health group.

Many of you have met @kariulrich and talked with her here about FMD. I thought you might enjoy reading a Connect Member Spotlight featuring her, published today: https://connect.mayoclinic.org/newsfeed-post/excited-to-find-others-with-my-rare-disease-meet-kariulrich/

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@lisalucier

Many of you have met @kariulrich and talked with her here about FMD. I thought you might enjoy reading a Connect Member Spotlight featuring her, published today: https://connect.mayoclinic.org/newsfeed-post/excited-to-find-others-with-my-rare-disease-meet-kariulrich/

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Thank you for sharing this interesting story @kariulrich FMD is a frightening disease. The fear of not knowing if or when an artery will dissect can cause anxiety and depression. Support groups are very helpful when you discover others with the same rare disease understand you.

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@fmdadvocate

Thank you for sharing this interesting story @kariulrich FMD is a frightening disease. The fear of not knowing if or when an artery will dissect can cause anxiety and depression. Support groups are very helpful when you discover others with the same rare disease understand you.

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Can you tell us a little bit more specific about this. When I google something medical, the symptoms seem to be always the same, and one feels, one is experiencing it.
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For those of you with FMD, how are you doing? Any new news?

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@kariulrich

For those of you with FMD, how are you doing? Any new news?

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Hi Kari,
I'm doing well, thanks for asking. I had a check up in April with Dr. Houghton and had a CTA and an MRA to check my carotids, renals and mesenteric arteries as those are the ones that are affected by my FMD. I take 5 mg Lisinopril and a baby aspirin every day so I am one of the very, very lucky ones. I received a letter about being included in the Registry from Dr. Shields, so I take that as positive. When I was there in April I did complain to Dr. Houghton that Mayo was not part of the Registry and pointed out that their competition was included in the the Registry so I thought Mayo should be more proactive there. He said he would talk to Dr. Shields, so maybe that is partly why Dr. Shields sent out these letters to the FMD patients. Who knows? Anyway, all is well and I hope it stays that way! How are you doing??

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@iagrrl

Hi Kari,
I'm doing well, thanks for asking. I had a check up in April with Dr. Houghton and had a CTA and an MRA to check my carotids, renals and mesenteric arteries as those are the ones that are affected by my FMD. I take 5 mg Lisinopril and a baby aspirin every day so I am one of the very, very lucky ones. I received a letter about being included in the Registry from Dr. Shields, so I take that as positive. When I was there in April I did complain to Dr. Houghton that Mayo was not part of the Registry and pointed out that their competition was included in the the Registry so I thought Mayo should be more proactive there. He said he would talk to Dr. Shields, so maybe that is partly why Dr. Shields sent out these letters to the FMD patients. Who knows? Anyway, all is well and I hope it stays that way! How are you doing??

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Awesome news about being included in the registry. Mayo was part of the patient registry, for many years. I am sure there is a valid reason they opted out. I am doing ok…. gearing up for my yearly MRI/MRA this fall. Seems each time they find something new, so it always makes me a bit anxious. Last time they found a AVM that I had not had in any previous MRI/MRA's. I have not researched FMD and AVM's much.

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@melanieangel

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?

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Hi Melanie,
Daily migraines I cannot begin to imagine how awful that must be. I have heard other FMD patients say they benefitted from Botox injections for migraines. I think the injections are done in the pain management department. I had my first stroke and was diagnosed with FMD at 48. I have a great aunt that had a cerebral aneurysm but she was not officially diagnosed with FMD. I have met others with family members that have been diagnosed. Best to you.

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@fmdadvocate

Hi Melanie,
Daily migraines I cannot begin to imagine how awful that must be. I have heard other FMD patients say they benefitted from Botox injections for migraines. I think the injections are done in the pain management department. I had my first stroke and was diagnosed with FMD at 48. I have a great aunt that had a cerebral aneurysm but she was not officially diagnosed with FMD. I have met others with family members that have been diagnosed. Best to you.

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@fmdadvocate I have a history of cluster headaches, I also get headaches daily. I tried botox from a local nurse here that does it and NO HEADACHES! This was not through my insurance or anything so it was expensive. Has anyone else tried it?

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