Comments on: Before and After Fibromuscular Dysplasia (FMD) Diagnosis

By: Kris

Kris — Thu, 09 May 2013 19:02:29 +0000

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.

By: Janet Seeds

Janet Seeds — Thu, 02 May 2013 15:34:43 +0000

In reply to Maggie (Jo) Dallas Hicks. 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.

By: CRK

CRK — Mon, 18 Mar 2013 19:18:57 +0000

In reply to Rachel J. Rachel, Can you share the doctor's name?

By: Neide M. Carneiro

Neide M. Carneiro — Fri, 17 Aug 2012 16:33:40 +0000

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.

By: Rachel J

Rachel J — Fri, 17 Aug 2012 13:51:12 +0000

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.

By: Irene Ohrbom

Irene Ohrbom — Fri, 17 Aug 2012 12:10:38 +0000

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.

By: Shelly Lyon

Shelly Lyon — Fri, 17 Aug 2012 04:50:55 +0000

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.

By: Maggie (Jo) Dallas Hicks

Maggie (Jo) Dallas Hicks — Thu, 16 Aug 2012 13:10:26 +0000

In reply to Lou lou Tillman.

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!

By: Lou lou Tillman

Lou lou Tillman — Fri, 20 Jul 2012 23:24:26 +0000

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.

By: Patti Kloosterman

Patti Kloosterman — Wed, 18 Jul 2012 16:23:25 +0000

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.