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.

@iagrrl I do know your cousin Jean! What a small world. So how are you doing??

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@kariulrich

@iagrrl I do know your cousin Jean! What a small world. So how are you doing??

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I am super busy, we move in a month! Trying to pace myself, not lift anything super heavy, but it is hard to slow down. Yes, I am a type A to the core. Most of the time I don’t hear the whooshing in my ear during the day, I hear it if I get my heart rate up or get upset. At night, yes I hear it when I first lay down but after that it doesn’t bother me.

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@kariulrich

@iagrrl I do know your cousin Jean! What a small world. So how are you doing??

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I was told not to lift anything greater than 10 pounds, I am glad you pointed out not lifting anything heavy. It easy to forget when you get busy in an activity. Let me know how the moving goes!! I will take in some extra naps for you :).

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This week Cleveland Clinic will be hosting their 2nd international symposium on FMD and it will include SCAD. I was able to attend the first symposium but will miss this one. I am happy to report that patients have been invited to participate in a patient panel on advocacy! We are making strides in this disease. For more information: https://my.clevelandclinic.org/departments/heart/medical-professionals/educational-opportunities/fmd-symposium#meeting-program-tab

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@kariulrich

This week Cleveland Clinic will be hosting their 2nd international symposium on FMD and it will include SCAD. I was able to attend the first symposium but will miss this one. I am happy to report that patients have been invited to participate in a patient panel on advocacy! We are making strides in this disease. For more information: https://my.clevelandclinic.org/departments/heart/medical-professionals/educational-opportunities/fmd-symposium#meeting-program-tab

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@kariulrich Thanks for sharing this Symposium information! Teresa

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Nobody at Mayo told me about any weight limit. When I say “very heavy” I mean anything over 40 pounds. Pretty sure when I travel my suitcase weighs about that much. LOL. I never have been one to pack light. I haven’t been packing boxes though so they are super heavy. I just try to use smaller boxes, but I am an book nerd, so that means lots of boxes of books!

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@iagrrl

Nobody at Mayo told me about any weight limit. When I say “very heavy” I mean anything over 40 pounds. Pretty sure when I travel my suitcase weighs about that much. LOL. I never have been one to pack light. I haven’t been packing boxes though so they are super heavy. I just try to use smaller boxes, but I am an book nerd, so that means lots of boxes of books!

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My weight limit came from Dr. Nazili McDonnell, she is a geneticist that did research on FMD and The overlap of connective tissue disease, ehlers-Danlos. She was an amazing researcher at The National Institute of Health, some of her work was published before the unfortunately closed the study. Each person is different, but with my carotid disease, brain aneurysm and AVM, I am a bit cautious. Doe you have any brain aneurysms? You may have told me but I forget, have you been checked?

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I had a brain MRI/MRA and I have 2 very small areas that the vascular dr didn’t think were of any real significance, just something to monitor. I will have a repeat scan in 2 years.

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@iagrrl

I had a brain MRI/MRA and I have 2 very small areas that the vascular dr didn’t think were of any real significance, just something to monitor. I will have a repeat scan in 2 years.

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Sounds like mine, monitor… the whole FMD approach is wait and see what happens, it took me awhile to get use to that! Lol Do you have a primary doctor in Iowa? I use to see all my doctors at Mayo, including primary care, which I liked. Unfortunately it has now changed and Mayo Rochester is no longer providing primary care to established local chronic illness patients. I am very disappointed in this change to say the least! I find with our chronic illness 15, even 30 minute appointments are not enough to cover routine check ups! Would love to hear your thoughts.

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“Variation in PHACTR1 keeps popping up in FMD and cervical artery dissection” (Ido Weinberg, MD
@Angiologist/ Twitter) #fmdscad2017 Common variation in PHACTR1 is associated with susceptibility to cervical artery dissection http://www.nature.com/ng/journal/v47/n1/abs/ng.3154.html

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