I was diagnosed with fibromuscular dysplasia in August of 2005, am from Adrian Michigan, am interested in making friends anywhere
I was diagnosed in 2003 with FMD of the carotids and vertebrals after dissections and a stroke. I am interested in knowing how others with a similar diagnosis monitor their disease, their symptoms, and any advise they may have on dealing with FMD in general. Doctors in my area don't know much about FMD, so education is definitely the key. Its scary when you know more than your doctors do in crisis situations!
I was very ill in my teens with an, as then unknown, rare “one off” condition and had a kidney removed as it had died. THen in 2004 I very nearly lost my remaining kidney which was 90% narrowed and tangled arterial distortions as well. It was then that I was diagnosed with FMD and then I was told that in 1973 it had been FMD as well but undiagnosed then. This was only diagnosed restrospectively in 2004.
I have FMD in both of my carotids and vertebrals as well as probably in other ateries as they hear many bruits and are suggesting a CT scan. I am interested in what one does to help oneself as much as possible to have better health and what type of tests and procedures others have had and under what circumatances etc. I am 64 and have heard a bruit in my left head for 40 years but until recently no one else could hear it. Now they can and I have been diagnosed with FMD and have seen my arteries from a disc in the doctor’s office. They look a bit like black peas on the black and white screen. I have had a few dizzy incidents that were quite severe and was admitted to a hospital. The first time they did not find anything but three years later they did the MRI MRA with contrast and found the FMD. I do sometimes get scared as I live alone and am just now trying to get some doctors here in FL. I am trying to learn more about my body and what I can do to help myself and others.
Diagnosed with fibromuscular dysplasia of carotids and renal arteries.
I have FMD in my renal arteries. I had an autotransplant of my left kidney in 2006 and have had two angioplasties on the right side.
Hi all!
I’m a 28 year old girl from Norway.
Unfortually my english is very lousy, havent written much the last 10-12 years… sorry!
I was diagnosed with FMD in 2004 after several minor strokes / TIA´s in 2003 (and probably earlier).
Doctors say that my risk of getting new strokes are small.
But since 2003 I’ve had daily various headaches, I dont like bright light or loud noises, I’ve got tinnitus and my eyes are not good (accommodation spasms).
Doctors says that I’m not supposed to have these symptoms. I dont think they believe in me, or they have given up on me.
But my life have changed much, and my “life-quality” is not really good.
I wich someone could help me, or at least believ in me.
Hope I can get some information or tips in here, but because of my bad writing I’ll be most reading.
Hope you understand my writing, if not - maybe you got a good laugh - and that’s a good thing too!!
I was diagnosed with FMD March of 2006 after a carotid endarterectomy, I was worried, shocked, I thought I was going to die. I spent 2 weeks on the computer looking for answers, as my doctor did not give me any.
I’m Ronni, and was diagnosed with Fibromuscular Dysplasia in 2004. My Mom also has it. We hope that with research we will have some answers to this disease.
My Sister has FMD. She also had cancer. I need to know all I can about this disease and understand better what she and many other people go through because of this.
Was diagnosed with fibromuscular dysplasia in 1977.
Was discovered in the left renal artery and had a surgury to replace the artery abut did not take and the right kidney died. Have lived with 1 kidney and now living on Meds. I hope that the research that is going on NOW is successful because I have 3 children and 7 grandchildren and do not want then to suffer as I have suffered most of my life.
I was diagnosed with FMD when I suffered a stroke in September of 2002. My right carotid artery had been dissected and a blood clot rushed to my brain. When they tried to operate on the clot, they learned that I had FMD and did not continue. I recovered the majority of my speech, with problems communicating when tired or stressed. My memory is not as good as it used to be, but I am in my late 50’s. I also had difficulty in reading. There are still problems with spelling and typing. Overall, I am content with the way things are going. There has not been any problems with the FMD. My doctor checks my kidney functions every year. There has not been any deterioation since the stroke.
I was diagnosed with bilateral carotid fmd in April 2006 and EDS in November 2007. I’m 39 years old.
I was dianoised with FMD this past month and am looking for treatment options.
I was diagnosed with FMD 10 years ago, and have yet to meet or talk to another person who has it. Both of my internal carotids are involved (left and right), and I’m looking for any information I can find, and especially other people’s symptoms and treatments, and how it has affected people’s lives.
I have known of my FMD for 2 1/2 years now, it involves 5 arteries that I know of, starting in my carotids. I have a LICA aneurysm that they tell me is inoperable, and I have to wait for a TIA or stroke before they will do anything other than watch and wait. I take aspirin for blood thinner. I try my best to spread awareness, am a member of FMDSA and follow the Yahoo group, though I do not chat much. I want to stay in touch with other FMD’ers.
For those of you that are not aware of it I want to post a message to let you know that goverment research has made a connection between Fibromuscular Dysplasia and Ehlers Danlos Syndrome. Ehlers Danlos is a connective tissue disease/syndrome that affects you tissues in your body. Those of us with EDS have weak joints, skin and internal body parts. EDS is a painful condition that can be misdiagnosed as Fibromyalgia or be the primary reason for Fibromyalgia. Children are taken away for child abuse because they may have a lot of bruising or dislocations of the joints. There is no blood test to prove that you have EDS but it is tested by checking the flexability of the joints. Can you touch the palms of your hands to the floor without bending your knees? Do your elbows and knees hyperextend? Can you touch your thumb to your wrist, bend your fingers back in an abnormal postition? Also, is your skin a bit stretchier than some, your whites of your eyes slightly blue, the pallet of the top of your mouth narrow?
If you have any further questions about EDS please feel free to email me or do a google search on Ehlers Danlos Syndrome to learn more about it to help you and other members of your family that may have this disorder.sdf
I am 40 years old and within the past 5 years my health has gone downhill. The pain from the Ehlers Danlos Sydrome has disabled me and left me with balance issues, weak joints, bruising, depression and many other problems. I have issues with the pain medications and it makes it hard to drive occationally and I have short term memory issues as well. I am lucky enough to have a VERY supportive family, wonderful pets and children to spend the day with and a lot of good friends. I am still learning about Fibromuscular Dysplasia because I was just recently diagnosed with it at the National Institute of Health. I have the beginnings of FMD in my right coratid artery. I found a cardiologist that will manage my care and ordered MRA’s wth contrast of my coratid and renal arteries. IF you have any other suggestions that may help with my care I would love to hear them as my doctor will learning with me as we go. It is nice to have a doctor admitt that he doesn’t know a lot about a condtion himself, rather than pretend he does. Sure I would much rather see a FMD specialist but that would be so far to find. After a lot of research I am sure that there are many of you FMD patients out there that know much more than any other doctor out there. Thank you all for being there to help those of us that are just beginning to learn.
Bethany
Hi!My name is Betty. I belong to the Yahoo Fibromuscular Dysplasia website and was encouraged to check this one out…
Hello to all my old friends, and hi to new ones!
Sincerely
Betty
I was diagnosed with FMD almost two years ago during an angio to check on a brain aneurysm before surgery. I’ve been having a hard time finding info on the internet about this disease.
FMD of carotid arteries with aneurysms of the brain