What age were you diagnosed with Fibromuscular Dysplasia?

FMDAdvocate
  • By FMDAdvocate · November 1, 2011 at 12:18 pm · 146 replies
  • In Living with fibromuscular dysplasia
  • Recommend         
    More options
    More options:
  • Shared with the public

Hi,
How exciting is this to find a member group for the FMDSA, Fibromuscular Dysplasia Society of America!
My FMD was diagnosed at the age of 48. I am curious about the age other members from not just America but all over the world were diagnosed with FMD?

Explore topics in this post

Explore topics in this post:

146 replies    Reply

SFkimberly

I was 48 too.....

cpeters

I was 54, diagnosed 6 weeks after a complete hysterectomy.

Bee-Jay

Hi!

Great to be discussing our FMD again...I miss my friends!

I was diagnosed...hmmm....in 50's...(bilateral renal artery FMD with aneurysms)...1 aneurysm removed at Univ Ca/San Francisco...back then, then opened patient up from breasts to pubic area, took out kidney and put it on life support, snipped off the aneurym and, in my case, reconnected it to common iliac...not fun having stitches all the way down front, but UC/SF was great, the surgeon was fantastic, and they all made sure I had has little pain as possible!
BJ

PamMace

I was diagnosed at 37 after dissecting.

onekidneygalinnorcal

Hi All, wonderful to have such a great site! Okay, I was diagnosed at the age of 39 after YEARS of hypertension. A nurse friend of mine told me I was to young to be on B/P meds with my hypertension still out of controll. So I went to a Nephrologist for the first time in my life and he suspected FMD. Had ultra sounds, then arteriogram......then diagnosed. So it means I went from the age of about 17 until 39 with out being diagnosed. Although I had a previous arteriogram at the age of 28 . The HMO at that time told me I just had a birth defect with my kidney. Ugh.

upnati

I was 42, hit with blood clot in left kidney, took 3 weeks to be diagnosed with fmd. Thanks to the Dr. who was ordered to remove my kidney, he recognized FMD when he saw CT/SCAN, saved my kidney. Transfered me to different hospital for angioplasty.(Ballooning) osn left renal, back in at 43 for ballooning on right renal, 45 now so far no more problems.

fairisle

I was diagnosed aged 49 after sudden audible neck bruits and very high bp- scan then found dissections in neck vessels. Also FMD renals and subclavians found on later scans.

airstream

I was 53. During an angiogram when the carotid artery was dissected during the procedure. They found I had FMD. They were trying to locate the bleeding in the brain from a ruptured aneurysm.

ForHisName

I was 37. Just diagnosed in April. Worst headache of my life during pregnancy. My OB admitted me and did an MRI, which showed my carotids are occluded. Thankfully a very smart neurosurgeon at the hospital suggested FMD. Renals have beading but bp is normal. I have had complex migraines for over 20 years, though. No doctor ever did any scans or prescribed anything. I had reached a point where I stopped trying. I figured they were just migraines and I had to live with it.

onekidneygalinnorcal

Steve and Bernard thanks for sharing your stories. I had not heard them before. I am thankful to you for sharing. I remember when I was diagnosed I was told I would never meet anyone in my lifetime with FMD as it was so RARE. Then the next part of that would be "very very rare for males to get". Yet I have met one man and now you two. I know there are more as well. I often think it is because the literature says how it is mostly found in women and you guys get overlooked. That is another part the registry will truly help with.
Having two boys I do not count them out and try to sneak a B/P reading from them once in a while! Hope you two can come to the conference next year. I met one of the male FMD patients at the 2010 meeting, but I know there was more. I just didn't get to meet them! Take care, mimi

mjr20008

I diagnosed at age 36 with bilateral carotid FMD when my tenacious doctor found the cause of the "swooshing" in my ears.

kittyboy

One year ago June I found out I had FMD carotid. Two months after I went on Medicare !! Because my carotids are 100% blocked, my vetebrals have trippled in size to compensate and my carotids have formed a bypass beside them. My dr said all kinds of strange things happened inside my head because I had no carotids, to help me. Isn't it amazing what your body does to help you live? Also, because of headaches at around 17, I have taken at least 2 full size aspirin since that age. I do mean every day of my life. Still do. The drs say it is probably what has saved my life. Kept blood flowing. Then these other things began happening to help me, bypasses, etc. They feel mine is congenital. Don't really know. I've had a perfectly normal childhood though.

I became dizzy (always having some type of headache) but thought I had inner ear infection at age 64 (66 now). Also began hearing major swooshing in ears. Went to ENT at 65 and after all hearing tests came back great, he did an MRI. He was shocked as he had never seen FMD. Said I had a very rare condition. Sent me to a Neurologist right away who knew what it was and from there an Interventional Neurologist (35 yrs old and Director of Stroke Center at Medical City in Dallas) that did my brain angiogram. At least my young dr studied it in med school. Other drs don't know how to spell it !! But I found out my renals were good, at least, and no aneurysms. Thank God. I will do that every year. I was a terror this June before my 1st MRI check for fear something had developed. But all good (or the same). Still worry about renals, etc. But after 50 or $60,000 I'm told to just keep taking my aspirin every day! Wow. Changed my diet and walk at least 3 miles a day now.

Don't know why, but I don't get dizzy much and headaches come and go. Never unbearable. If I had a really unbearable headache, I would worry about dissection. It's a fear of course, of stroke. They say because of my aspirin comsumption, I lasted till 65 to find out. Most find out at a much earlier age.

Flynjac

HI, I was 33yrs old when i was diagnosed with FMD, was very healthy and fit, just starting having severve headaches. Went to my doctor my blood pressure was extremely high. Admitted to hospital had a angiogram and a diagnosis of FMD to my left kidney.
Had an angioplasty which was quite a difficult procedure due to where the stenosis was, an area of my kidney was infarcted. i recovered well am still on a hypertensive medication small dose but i feel great am back to my active self :)

PamMace

Wow, thanks for sharing, some pretty scary stories. Being diagnosed during pregnancy had to be scary- your lucky you had such a great doctor.

onekidneygalinnorcal

Wow, your stories are so full of information! I am going to ask my doctors to join this site and learn! We are after all the ones they are learning from at this stage of the game! Thanks all for sharing, I find very interesting!!

Codyblue

I was just diagnosed in May this year aged 31. I had my second brain anuerysm in 11 years.During coling of the anuerysm, FMD was diagnosed. But have had nothing since, i have never sat down with a doctor and spoken about my FMD or had my Kidney's checked, nada, nothing. I am fighting the last 6 months. I could be heading across the water to America yet... All I have learned about FMD is through the wonderful FMD'ers on line. without them i dont know what i would do.

mkathy

I was diagnosed at age 64 after 10 years of migraine headaches and 25 years of high blood pressure . My internist was the one who ordered a kidney MRI because of my BP spikes. The MRI looked suspicious so I went to a nephrologist who thought my spiking BP was due to my weight and lifestyle. Two years later when my BP spiked to 210/190, they decided to do the angiogram. After the angioplasty, the interventional radiologist and nephrologist said that they had egg on their face because I had renal artery stenosis caused by FMD and not arterioscherosis.

About a year ago, I was talking to my pharmacist about FMD and she seemed interested . I gave her a copy of the "Fitness" magazine article about FMD.The other day she told me that she had just been diagnosed with FMD. She had kept the article because she had a feeling that it might be what was causing her problem. Months later, she brought the article to her doctor when she was having trouble regulating her BP. The doctor decided to do the angiogram and that is when they discovered the FMD.

She was so happy that her BP was under control now and thanked me for telling her about my FMD. I felt very good about having helped another "FMD'er.

FMDAdvocate

Thank you for sharing your story with us & your pharmacist!
I was laying on a physical therapy table when my PT looked at the medical ID on my tennis shoe. She asked me what it said & I told her FMD. Then she told me she had FMD too!! Isn't life interesting!

I am hoping someone else I know in our group will share her similar experience. We could start a new discussion.

onekidneygalinnorcal

My mom used to say "life is stranger than fiction Mimi". That is great you spread awareness with your Pharmacist. I always reflect when my doc said I would never meet another FMD'er in my lifetime. HAH! The strides FMDSA has made to help us is incredible. I have a similar story but not as exciting. I was at a FMDSA conference once and we were spreading awarness to the medical personell. A nurse came up and was talking to us. Pam told her all about FMD in that nursery fashion of hers :}. The nurse wondered if she could have FMD as she had B/P issues. So she went home and was checked out, and yes she had it! We just aren't that rare!
Great story mkathy!

Cody Blue, so glad you found us! Hope you are reading all the information on the FMDSA.ORG site. There are also some great videos with Dr. Gornick and links to the web chats!

donnafaye

I was 27 years old when I found out that I had FMD. Had very high blood pressure and had a stroke. Had Renal Artery bypass but did not work. So now I am almost 62 and have lived with only one kidney for 34 years. I do have high b/p and have to take b/p meds.

Please sign in to reply

Don't have an Inspire account? Join now!

Forgot password?

Things you can do

Support FMDSA

Help the Fibromuscular Dysplasia Society of America reach its goals and support people like yourself by making a donation today.

Donate to the Fibromuscular Dysplasia Society of America

Discussion topics

FMDartery: @ChildrensPhila Dr. Kevin Meyers,CHOP, speaking on Genetic causes of Renovascular Hypertension in Children @FMDartery Conference May 19th.

FMDartery: Chicago Sun Times reports #SCAD, spontaneous coronary artery dissection & Fibromuscular Dysplasia. http://t.co/FWrUCWAI

FMDartery: RT @ATA_1971: Tinnitus Awareness Week starts today! May 13-19, 2012 http://t.co/99RwAzOY Today's activity: Request ATA’s... http://t.co ...

FMDartery: Happy Mother's Day to all FMDers!

FMDartery: You can still register for the FMDSA conference in Cleveland on May 19th.http://www.fmdsa.org/news/annual_conference

Resources from FMDSA

Group leaders

0 Recommendations    Recommend