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SandraH (@sandrah1)

Fibromuscular dysplasia (FMD)

Heart & Blood Health | Last Active: Sep 11, 2019 | Replies (56)

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@iagrrl

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!

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Replies to "Hi, I am a 61 year old female from Iowa who was recently diagnosed with FMD...."

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.

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.

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!

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.

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!

@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.

@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!

Hello @iagrrl and welcome back! You will notice that I have added your discussion to an already active thread so you can meet other members here discussing Fibromuscular dysplasia.

It looks like you have already met @kariulrich, one of our fabulous mentors on Connect. I’d like to also introduce you to @melanieangel @enoevian who also have FMD.

@iagrrl …. I believe I know your cousin Jean! Wow small world, she was the principal at Southwest middle school when my youngest was there! She is missed in our district greatly! I am happy to hear you are going to Mayo, they are very knowledgeable with FMD. Most of us FMDers are type A personalities, so the fatigue can be very frustrating at times. How are you doing? How is the swooshing in your ear? Mine is really loud to night! Hope your week is going well!! 🙂

@iagrrl, I do know your cousin Jean! What a small world? How are you doing??

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