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Kari Ulrich, a patient with Fibromuscular Dysplasia (FMD), shares her story of struggles before and after being diagnosed with FMD in 2007.
Kari writes:
“Looking back to my early twenties, I suspected that the symptoms I was experiencing were not something every twenty year old faced. I always looked healthy on the outside. I was judged by my appearance, not on the symptoms that I was describing to my health care provider. I had been diagnosed with hypertension at a young age, but was never worked up for the cause. I suffered from a multitude of connective tissue symptoms, and abdominal pain but no one was able to put the pieces of the puzzle together.
Almost 2 decades later at age 39, through a coordinated evaluation at Mayo Clinic I finally had the answers to what had been causing my symptoms.
In July 2006 I started running. My long runs were 10-13 miles. I was training for a half marathon. In the spring of 2007 I felt short of breath going up stairs, could not run the distance I use to. I went from running 10-13 miles to being able to run only a mile. I developed palpitations, and felt very dizzy just sitting at my computer. I also had a very loud swooshing in my ears. I saw a cardiologist for my frequent PVC’s and he heard bruits in my carotid, epigastric, renal and femoral arteries.
What started out as exercise intolerance turned into something more serious.
In April of 2007 I was diagnosed with a rare vascular disease called Fibromuscular Dysplasia with brain aneurysms. My FMD affects several of my vascular beds. The arteries that supply my kidneys are affected causing high blood pressure. The arteries supplying my carotid arteries are also affected causing neck pain, headaches, dizziness and a loud swooshing sound in my ears. For many FMD is an invisible illness, which makes getting a diagnosis even more of a challenge for physicians.
My abdominal pain was caused by stenosis of my celiac artery secondary to median arcuate ligament syndrome (MALS). For many years I had symptoms of weight loss, nausea, and food avoidance. The pain at times was so severe that I would forgo eating meals with my family. Mayo Clinic took the time to put the pieces of the puzzle together. I underwent a cath angiogram where my FMD was confirmed and MALS was diagnosed. In August of 2009 I went through a celiac bypass and bovine patch to my hepatic artery for treatment of MALS.
My quality of life is better because of my team of physicians at Mayo Clinic. I believe that Mayo Clinic’s team approach to health care has prevented me from having a stroke or dissection. I am grateful for the care I received at Mayo Clinic, they continue to monitor my health and allow me to actively participate in my care. “
Oh Kari! This story sounds so familiar! I’m so sorry you had to suffer for so long before getting a proper diagnosis and treatment. As FMD patients work to raise awareness of FMD and other rare diseases we can hope there will come a day when no other young people will have to suffer and wonder “what is wrong with me” for years before they get proper treatment.
My daughter has been diagnosed with fibromuscular dysplasia after an attack of stroke symptoms.she says she had this funny swooshing sound in her right ear for many months not knowing what was wrong.She was seen by the neurologist after the stroke and was diagnosed after MRI Scan.She was admitted to Flora clinic in Johannesburg South Africa.Iwish there could be treatment for this condition.
My FMD was found after a bike accident I had April 1, 2012 in which the inner wall of the artry tore and a small piece went into my brain causeing me to have a stroke.
Listening to Kari talk about her symtoms made me feel so much better, because for year I have experienced symtoms of swishing sounds in my ears, migraines and days where I don’t feel like getting out of my pajamas either. I get exhaust quickly too and it has been an embarrassment when I couldn’t keep up with my friends. I just felt like I was so out of shape.
My friends and I were avide Wine tasters and always going to wine tasting. But I was informed that it would be my best interst to never drink alcolhol again.
I was diagnosed at age 38 with FMD after suffering a dissection and stroke. My renal arteries were not affected-but they did not look into femoral arteries . I’ve had extremely cold feet for years which have become regularly numb. I’d like to follow up with Dr that is up on this aspect of FMD.
I was left with 90% occlusion of my L-ICA.
In hindsight-my stamina was always less than others naturally . The one mile gym run was too challenging ( always last). A few isolated incidents of “blackouts” never meant much because I was so healthy with weight lifting etc. I had no risk factors for stroke. I was in tremendous shape in my thirties. I ate well /exercise/no bad habits.
Consequently-it took a week for doctors to recognize a progressing stroke because of my youth and health. By a week out I was impaired with speech /arm/leg. It took 5 years to come back. Still not as sharp as I was.
I ,too, went to Mayo a few months later-but there was nothing to offer me .I did not have any aneurysms. A 90% occlusion was “providing enough blood flow”
Its been years since a followup MRI/MRA-(I had started to hate them) Its time to check for any developing aneurysms-
Thanks for posting . I will attend FMDSA Cleveland -that sounds great.
I was diagnosed in 1992 at the age of 55. I had symptoms all of my life that no physician could correct. Blood pressure and headache medication was given for years. I had a carotid artery dissection in 1992 and was told that I had FMD. Throat, tongue and face paralyzed for a several weeks. My family and I were told by the neurologist that nothing could be done for me. Not much information was available at that time about the disorder. I was also told that what occured in my artery was normally found in autopsy.
I am now 75 (just a number – not what defines me!) and have had problems since but have a good life. I have a good team of doctors in Mobile, Alabama who are well informed in FMD issues. I have been diagnosed with carotid, vertebral and renal FMD. Have had angioplasty twice in right renal and rarely have high blood pressure. I am so thankful that more and more is being learned about this disorder. I do not believe it is inherited. I am from a very large family (7 siblings) and lots of extended family. There are no relatives with anything to indicate FMD.Thanks for sharing your story!
I am 56 and was diagnosed almost 3 years ago. I suddenly got high blood pressure and my primary sent me to a kidney specialist to rule out any other problems. Well, she did some tests and I ended up having a balloon angioplasty. Now, my blood pressure and heart beat keep fluctuating, and there is another blockage in my renal artery, but they are hesitant to do angioplasty for fear my blood pressure will go too low. I keep having migraines, pressure, and dizziness so my kidney doctor is doing tests on the arteries in my neck and abdomen. It makes me wonder if various symptoms throughout my life have been cause by FMD.
Tears running down my face as I read this. Still struggling with my diagnosis-a lifetime of hard work and a job I loved turned to disability that isn’t recognized. I don’t ‘look sick.’ Love and support to Kari and all who are dealing with FMD. It isn’t pretty.
I was diagnosed 8 years ago with FMD in my renal arteries. Consider myself to be one of the lucky ones in that I have not have a major life event (stroke or heart attack) and that I have no damage to my kidneys. Due to very high blood pressure from the FMD i have had 7 renal angioplasties. Thanks so much for sharing your story as it helps spread awareness and that is key.
Thanks so much Kari for giving us a voice! I have been turned away by multiple doctors who don’t want to take on the risk of treating my FMD. I found one doctor in all of Illinois to help me. Thanks for building awareness.
Rachel,
Can you share the doctor’s name?
I was diagnosed with FMD in February of 2008 after a stroke and a subarachnoid hemorrhage . I had being having headaches for months before that would not go away and vision problems as well. My eye doctor had suggested that I should go see my regular physician and mention that he saw something that suggested I could’ve had a “mini stroke” . The regular doctor dismissed it… The headaches got worse and I began having earaches and a “wooshing” noise as well by the end of 2007. That then became an every day thing and finally on January 31st, while skiing I suffered the stroke. Blood inundated my brain. No one know how I survived and caused some brain damage. After several tests a neuro surgeon that I knew came in and suggested that I may had FMD, a rare disease and ordered an angiogram. Was then that we discovered that I had it in both carotid arteries and also renal arteries. I don’t have high bp. As a matter of fact, my bp is excellent. I have very high colesterol. In my family, all my aunts and great aunts died of strokes and my grandfather, I believe had FMD, because I remember him complaining of daily headaches, etc… Pain is constant now and I also have an auto immune disease, RA which makes everything more complicated. It is very difficult to find a neurologist to treat FMD and extremely frustrating… I am in Atlanta, GA and to this day I am still without treatment or relieve for FMD.
I developed very high blood pressure at the young age of 21. The doctor tried me on many different meds and diuretics will little control. I finally changed doctors and saw a cardiologist. I had a renal arteriogram through my leg artery and they could see the blockage very near to one kidney. I had a bypass done and everything was wonderful. Suddenly at 59 years of age, similar symptoms and bad response to meds. The bypass had become blocked and so had an angioplasty through the original artery. Dopplier ultrasounds have a difficult time “reading” the bypass area. Blood pressure so much better, no meds needed, but I still need to watch it.