Please take a moment to introduce yourself to the community. Everyone here has something to share about Fibromuscular Dysplasia. For the discussion boards, we ask that you keep your full name and location private.
I have FMD, EDS, and cerebral aneurysms
Hi… My name is Kim and I was diagnosed with carotid FMD.
Diagnosed with renal FMD and aneurysms
I am the mother of a child with FMD.
My name is Emily Diggs. My daughter has FMD in her renals and intestines. I want to learn as much as I can about this and talk to others that have it.
I’m 52 years old, with FMD of the carotids and verterbrals. I learned I had it definately about 4 years ago, but it was thought I did a few years before that by the radiologist. I’m married have 3 children and 7 grandchildren. I also have Spasicity due to brain damage, now thought to of been caused by a stroke after a car accident and IBS. I get migraines, vision problems also,also I get chest pains that Doctors can not figure out why or what is causing them. I have a wanna be extra bone in my spine, it’s not a verterbre or a tail bone, but it throws off my back and causes back pain. I love doing crafts of all kinds, from making quilts to ceramics, and woodworking to you name it. I get bored of one thing and go to another. I had lost over 100 pounds but slowly it’s finding me again, gained back 40pounds. I love camping and walking and animals. I have a Quaker parrot that talks. Other than going to our camper I’m a home body. I wanted to be a nurse but couldn’t due to my health so,I wwant to donate my body for medical research, maybe they will find a clue to fix FMD or any of other problems I have.
I am 49 year old woman, diagnosed 9 years ago with FMD. I want to kepp informed and have a place to ask questions.
I have Fibromuscular Dysplasia,brief history-1st stroke age5, first heart attack age21,alot of strokes,tia’s, heart attacks.i am parrellized on my left side but have adapted well.
diagnoised with fmd 1999 at Mayo
52 year old female married 2 grown children who do not at this time show any signs of fmd
It’s hard to remember exactly, but I think it was a circuitous route which began with my researching carotid artery dissections. There was a post on the stroke survivor group saying fibromuscular dypslasia (FMD) was an underlying cause of dissection. That led me to research on FMD. Because of my symptoms, I definitely think I have both. Therefore, I am searching not only for information on FMD, but more importantly, for a way to get correctly diagnosed. I am convinced not every radiologist knows how to read images for FMD. Although it looks like the Mayo Clinic is competent. However, Minnesota is not in my neck of the woods. Because of my symptoms, some other FMD support group members are encourasing me to apply for the NIH study on connective tissues, which includes FMD patients. I’m afraid if I apply without a diagnosis, I won’t get accepted. Therefore, I am trying to get correctly tested, my kidneys and cervical arteries. It’s hard!
I was diagnosed with FMD in both my carotids 4 1/2 years ago. I have had angioplasty and two surgeries on my left carotid including vein grafts. I am a high school teacher with three years to go before retirement and I am fairly healthly. I live near Mobile, Alabama and I haven’t ever met anyone else with FMD. That is why communicating with others who have FMD sounds great to me.
I have FMD in multiple arterial beds. I am a heart attack and stroke survivor. FMD caused the heart attack.
I am interested in FMD research, and knowledge about the disease.
I love to garden, pets, birdwatching etc.
I was diagnosed in 2003 of bilaterial carotid FMD after suffering from an eye stroke. I just want to stay updated on current symptoms of others as well as diagnostic tests and treatments of this disease.
I have FMD and have known since 91 when I had a brain aneurysm. I was working and doing well until 2003 when I had an aortic dissection. I have met some great people on-line with FMD. I am now at the point that I must keep my blood pressure down and sense of humor up.
I have fibromyalgia, POTS, and fibromuscular dysplasia. I am British, worked as a nurse on a vascular surgery ward, now live in Spain as the warmer dryer weather suits me better.
I have been diagnosed with “possible” FMD in my carotid and vertebral arteries. After a visit to the chiropractor for a neck adjustment in November 2006, I had 3 dissections - bilateral carotid and left vertebral - and then a stroke. Before that I was, I thought, a healthy 36 year old. I am a mom of two young ones ages 4 and 1, and I am lucky enough to work from home. Now I have plenty of time to learn about this disease. I recently had to visit the ER again for a severe headache (luckily, a false alarm), but it was apparent that me and my husband were way ahead of the neurologists and radiologists at the hospital as far as FMD education and what to look for - all thanks to FMDSA and the FMD Yahoo chat room. Thanks for starting this new board - is it a complement to the Yahoo board or is that going away?
I am a 42yr old female who was diagnosed with mesenteric and renal fmd in 2003.
I am always looking for info on this disease as there is not much out there for mesenteric fmd.
I hope to connect with others that have this kind .
If you haven’t yet checked out the Fibromuscular Dysplasia Society of America, please do. You can visit their website at: www.fmdsa.org or do an internet search under FMDSA to found out more about the work they do to support FMD awareness and research.
51 year female …FMD in carotids for 6 years…2 TIA’S…love to hear what all of you have to say…it helps