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SandraH
@sandrah1

Posts: 1
Joined: Jan 30, 2012

Fibromuscular dysplasia (FMD)

Posted by @sandrah1, Feb 11, 2012

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

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melanieangel
@melanieangel

Posts: 1
Joined: Dec 07, 2016
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?


Colleen Young, Connect Director
@colleenyoung

Posts: 3550
Joined: Jul 23, 2014
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?

Liked by bubblesbrew


enoevian
@enoevian

Posts: 2
Joined: Feb 27, 2017
Posted by @enoevian, Sun, Feb 26 6:59pm

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.


Colleen Young, Connect Director
@colleenyoung

Posts: 3550
Joined: Jul 23, 2014
Posted by @colleenyoung, Sun, Feb 26 7:54pm

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
@enoevian

Posts: 2
Joined: Feb 27, 2017
Posted by @enoevian, Mon, Feb 27 5:21am

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!


Kari Ulrich, Volunteer Mentor
@kariulrich

Posts: 253
Joined: Jul 15, 2011
Posted by @kariulrich, Mon, Feb 27 5:51pm

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


Kari Ulrich, Volunteer Mentor
@kariulrich

Posts: 253
Joined: Jul 15, 2011
Posted by @kariulrich, Mon, Feb 27 5:58pm

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.


iagrrl
@iagrrl

Posts: 8
Joined: Apr 27, 2017
Posted by @iagrrl, Thu, Apr 27 3:20pm

Hi, I am a 61 year old female from Iowa who was recently diagnosed with FMD. I thought I would introduce myself to the group, I am here to learn as much as I can about my disease. My left carotid and my renal arteries are affected. I have high blood pressure and whooshing in my ears, but I am lucky, my blood pressure is easily controlled, and my cholesterol and triglyceride numbers are very good. So I am eating a plant based diet, exercising, taking a daily aspirin and just doing my best to stay healthy. I know there are no guarantees, but that’s life!


Kari Ulrich, Volunteer Mentor
@kariulrich

Posts: 253
Joined: Jul 15, 2011
Posted by @kariulrich, Thu, Apr 27 5:54pm

Iagirl, I am not too far from you…. I am in Albert Lea, MN! 🙂 I think I read your posts backwards! Sorry about that. I have FMD in bilat carotid arteries, renal and femoral arteries. Small brain aneurysm, and AVM and MALS. I also have connective tissue overlap Ehlers-Danlos Syndrome. I am 49 years old, been diagnosed for a while now. Do not want to overwhelm you with info, so feel free to ask me anything!! I will do my best to try answer any questions you have or direct you the the appropriate places.


iagrrl
@iagrrl

Posts: 8
Joined: Apr 27, 2017
Posted by @iagrrl, Fri, Apr 28 10:45am

Oh my gosh! My cousin Jean lived in Albert Lea for years, she used to be the principal at Lakeview and then moved to Southwest(?) Middle School. My daughter Leah used to teach English at Albert Lea High. And I used to live by Waterville for many years. I used to be an x-ray tech at the Mankato Clinic. Small world. I am not familiar with all of the various things you mentioned. I will have to look them up. I do have some fatigue from time to time, but I just figured that was part of getting older. I am a type “A” personality so mostly I just power through whatever is bothering me. I will have to learn to change my behaviors some I think, LOL. Yes, i do go to Mayo Rochester. I called there yesterday to ask about a registry of FMD patients and the person I talked to told me I would get a letter from some Dr (can’t remember the name) and that when I come back in 2 years for a followup MRI/MRA they will draw blood and I will fill out some papers to be part of their registry. She didn’t seem familiar with the national registry that I have been reading about so that makes me think that Mayo is not one of the 9 registry sites?? I have not have angiography done, just ultrasounds, an echo, and MRI/MRA so I don’t know about my femoral arteries. But when I go back to Mayo I will inquire about angio.


medicalmedia
@medicalmedia

Posts: 3
Joined: Aug 16, 2011
Posted by @medicalmedia, Fri, Apr 28 11:25am

Greetings, I am 60 years old, have renal and carotid FMD, ear swishing and hypertenion , we are very similar! Just wanted to pass along some info. I was diagnosed 21 years ago and going strong. With the resources of FMDSA.org ( medical institutions such as Cleveland Clinic, Mt. Sinai, Emory, Mayo, Vanderbilt, University of Michigan, University of Virginia, UC Davis, supporting FMDSA) I have learned much about FMD. I just wanted to let you know Mayo is not part of the FMD registry, if you were inclined to be part of one. You can check the registry sites on FMDSA website. Also are you aware of the annual FMDSA meeting in May in Cleveland? There are top notch speakers and many fellow FMD’ers to meet. The Date is May 20th. Also check out the
FMDSA facebook page. Sounds like your FMD is well controlled! Best of luck!


iagrrl
@iagrrl

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Joined: Apr 27, 2017
Posted by @iagrrl, Fri, Apr 28 11:59am

Thanks for your response, yes, we do sound similar! I have heard about the meetings in Cleveland, but we are in the process of moving so I won’t be able to attend this year, instead I will look forward to next year. Thanks for the info.


medicalmedia
@medicalmedia

Posts: 3
Joined: Aug 16, 2011
Posted by @medicalmedia, Fri, Apr 28 12:48pm

You are most welcome. I forgot to mention several times a year FMDSA and the Cleveland Clinic have a online webchat with Dr. Gornik and Pam Mace. Dr. Gornik considered by many as the leading expert on FMD (Dr. Jeffrey Olin in NY at Mt. Sinai as well). Anyway you can find old transcrispts on the FMDSA.org website with tons of questions answered by Dr. Gornik.
Good luck with the move! Have gone through that and it is a task!


Kari Ulrich, Volunteer Mentor
@kariulrich

Posts: 253
Joined: Jul 15, 2011
Posted by @kariulrich, Sat, Apr 29 2:12pm

@iagrrl http://www.mayoclinic.org/diseases-conditions/fibromuscular-dysplasia/home/ovc-20202077
If I remember correctly Mayo Clinic sees more FMD patients than all of the registry sites put together. They use to be part of the registry but stepped down from participating the last I heard. I have been to the FMDSA conference and found it very informative.

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Kari Ulrich, Volunteer Mentor
@kariulrich

Posts: 253
Joined: Jul 15, 2011
Posted by @kariulrich, Sat, Apr 29 2:17pm

@medicalmedia Welcome to Mayo Connect! So happy to have you here! Thank you for sharing the FMDSA resources! Is there any symptoms that bother you the most? The pulsatile tinnitus is something that I have learned to live with but it sure can be bothersome at times!

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