Mayo Clinic Connect
Is anyone aware of ongoing discussions or research regarding Fibromuscular Dysplasia?
Liked by Kari Ulrich, Volunteer Mentor, Finland30, bubblesbrew
@sylviam How are you doing? Being diagnosed with FMD after an event is overwhelming to say the least. Please know you are not alone in this journey. It takes many years to get use to a FMD body. It is important to find a physician you trust and that can work with you until you get a handle on what your body is telling you. The first few years I was visiting my specialist monthly to understand what my symptoms meant. I was always second guessing myself if I had signs of tia, but with the help with my amazing team of doctors together we learned. You will find out you are you best advocate… do not be afraid to ask questions. I would keep a calendar of symptoms and questions to show my doctor, that way he would get a better picture of what was happening in between visits. Going from doctor to doctor is overwhelming, but necessary when you have a multi-system disease. If it gets overwhelming please let them know, sometime we need a break from the hospital and clinical environment. You may notice that you have more fatigue now, that happens to so many FMDers. no one can tell us why but to me there is validation knowing other patients need “pajama days”. Other patients are a great resource, use us, that is what we are here for. We may not always have the answer but we sure will try to point you in the right direction! What kind of work up have you had for FMD thus far? Have you been checked for brain aneurysms? Hang in there, one moment at a time!
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@sylviam aortic dissection, that is a big artery! Do not hesitate to go back to the er if you have symptoms before you hear back! Sorry I was not clear about the medical id… a medical ID bracelet, in case of an emergency, something that lists you diagnosis. So you go to Boston Mass gen, they have a great vascular department, happy to hear you are in good hands.
For those of you diagnosed with FMD here are some links that have been shared with me that you may find helpful:
Here are the websites of the four FMD patient associations worldwide
http://www.fmdsa.org ( USA – English)
http://www.fmdaa.org.au ( Australasia- English)
http://www.fmdgroep.nl ( Netherlands – Dutch)
http://www.fmd-be.be ( Belgium – French, Dutch, English)
Living with FMD Quality of Life Study: Diagnosed and living with fibromuscular dysplasia: A qualitative inquiry
Sherry M Bumpus, Christa Kuck, Steven T Heidt (2016, October 6).
Hi All, I am 32 years old and my doctor is pretty sure that I have FMD. I went for a yearly routine health exam and because my dad had a stroke at 60yo, my doctor decided to listen to my carotid arteries. To even her surprise she heard a bruit in my right carotid artery. For this reason, I went for an ultrasound and the vascular team said that my blood is flowing faster through my right carotid artery and believes I have FMD. I also didn't know this was a symptom and will tell my doctor, but I also have pulsatile tinnitus. I just figured it was due to bad sinuses. Anyway, while everyone is pretty sure I have FMD, since my labs are normal and I'm very healthy otherwise they're not sure they want me to undergo additional testing to confirm. I spoke with my doctor and he said he'll advocate for me to have the testing so I have answers. I should know in about a week and hope they approve further testing, especially as I continue to learn more. Any advice or low-key symptoms I should be looking out for is greatly appreciated. Thanks!
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/
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.
Liked by Colleen Young, Connect Director, Teresa, Volunteer Mentor
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.
For those of you with FMD, how are you doing? Any new news?
Liked by Kanaaz Pereira, Connect Moderator
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??
Liked by Kari Ulrich, Volunteer Mentor, Kanaaz Pereira, Connect Moderator
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.
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?
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.
Liked by Kari Ulrich, Volunteer Mentor, Colleen Young, Connect Director
@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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