Is anyone aware of ongoing discussions or research regarding Fibromuscular Dysplasia?
Interested in more discussions like this? Go to the Heart & Blood Health group.
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
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!
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?
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.
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.
“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
Hello, I have fmd. I’m 50 yrs old and had an aortic dissection in nov 2015. Then aug 2016 had a stroke. I’m kind of confused with all that’s happening to me. I don’t know what’s happening actually. I was perfectly healthy now not so much, i go from Dr to Dr and it’s annoying. Any advice?
@sylviam, thank you so much for reaching out to Mayo Clinic Connect, I have so much I would like to share with you about FMD, I have been diagnosed for over a decade and have learned a lot in that time. My son just graduated tonight, so I am a bit tired to go into great detail, and I want to give this post the time it deserves, so please forgive me, but I would like to answer when I have more time, so I can focus on giving you the best advice I have to offer. I hope you forgive me for being brief tonight. Just quickly, I have widespread FMD with brain aneurysms and avm, I also had open MALS surgery twice. And ehlers-Danlos syndrome, it sounds like a lot, but for some of us there is a connection. Have you been checked for EDS? Or any other connective tissue disease on top of the FMD? Would like to hear more about your symptoms. I will try and give a better picture of FMD tomorrow! Remind me if I forget!!! Thank you again for posting!
@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!
Hello, I’m so confused though about all of this. I keep going from Dr to Dr for different tests. Today I went to respiratory and was crying, for no reason. I feel so short of breath all the time. Tired too. I can’t even workout cause I feel like I’m dying. I want it all gone. Granted I know now that I’m 50 things happen but lol. My boyfriend doesn’t get it. He pushes me to work out all the time. I keep telling him I can’t. He means well but ugh. What kind of work up do I need for fmd? I see a cardiologist, a kidney Dr, oh and I forget a lot of things too. Is that normal for fmd or just age lol thanks for reaching out.
@sylviam This disease is confusing! I believe both Mayo Clinic and Cleveland Clinic are recommending a one time full body CT scan to check for vascular beds affected along with aneurysms. It is OK to cry! I have had this disease for over a decade and I still cry… I don’t believe it is for no reason. I think when our body and mind gets overwhelmed with it all we cry and that is OK! I get short of breath walking up a flight of stairs or talking on the phone, it comes and goes. Some days are better than others. One suggestion that I have that I believe all newly diagnosed FMD patients should go through is cardiac rehab, although we have not had a typical MI we have the same vascular problems and concerns, I have found it to be beneficial. Unfortunately getting proactive treatment depends on your team of doctors. Exercise is good, however you must talk to your vascular doctor about any limitations. This is a systemic disease and we do not recover as fast as most people. We can have a good day and it could take several days to recover from that one good day. This has nothing to do with you age and everything to do with the disease in my humble opinion. Maybe your boyfriend could join us here on connect to give him a better idea of how we have to modify ourselves after diagnosis. Forgetfulness is common amongst the FMD community, although the medical community has not figured out why this happens, we call it brain fog. It just takes us a little longer to get words out, or remember certain things that came so quickly prior to diagnosis. You will find that FMD patients are very intelligent and educated on their disease. We adapt quickly but it is not easy. You will go through many physicians until you find the team that is right for you, don’t get discouraged if you feel dismissed at times. This happens, and we have each other to lean on. Our disease is invisible, we do not look sick or unhealthy on the outside and that makes is very difficult for others to understand what we are going through. Give yourself permission to rest, to cry and to regroup and fight again. Gentle hugs! Oh…just a FYI, here is a list of my team of doctors I see: Internal Medicine, Neurology, Nephrology, Vascular Medicine, Vascular Surgery, Genetics, GI, Cardiology, Women’s Health, and I have a great therapist when I need her. I am sure I am leaving a few specialist out, but you get it…we all have a tremendous team of physicians!
@bluegiraffe I waned to welcome you to Mayo Connect! I hope you see this message!! Would love to hear your experience with FMD if you feel comfortable sharing it. I have widespread FMD with small brain aneurysms and a AVM. I still have my pajama days despite having years of experience with this disease. Hope you are doing well and again welcome to the community.
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