How Was YOUR FMD Discovered? by JustJennifer

This blog is dedicated to the fellow “FMDers” who gave permission for me to share how their fibromuscular dysplasia was first discovered. Although represented here only by numbers (to protect their privacy), they have become friends to me whose experiences have pierced my heart. If you are a physician, my earnest hope is that you might read this and think of the patients you are currently treating who are reporting the same symptoms. We are not doctors, but we have learned firsthand that this commonly overlooked disease has even more devastating results when doctors continually ignore the symptoms, avoid the search, and disregard the patients. Please hear the stories of how FMD was finally discovered in the following 27 people:

1. “Mine was accidentally discovered. I went to the doctor for a breast mass and he heard the whooshing in my carotids and sent me to the cardiovascular surgeon. The strange thing is about five years prior to that a different doc heard it and sent me for an MRA but nothing was detected. Makes me wonder if they missed seeing it.”

2. “My daughter's was accidental. She was four years old and went to have her tonsils and adenoids removed, and her BP shot up really high. She was sent by ambulance to children's hospital, had renal angiogram done, and it was found that way.”

3. “I actually have the opposite problem of dangerously LOW blood pressure. My case is also different because I don’t have the ‘string of pearls.’ My FMD is in both internal carotid arteries and it looks like branches growing off to the sides of the main arteries. The doctor said it is ‘aneurysmal’ but not (yet) fully formed aneurysms. This was discovered after a recent complete collapse with horrible fatigue and headaches (that are now worsening), but it is still not known whether FMD is the cause of the collapse or was just a coincidental finding.”

4. “I had bruits for 22 YEARS, but no one could figure out why until 2009. Prior to that, any tests I'd had done before never showed anything. The doctor listened to my femoral arteries and heard bruits. It wasn’t until 2009 that a Mayo Clinic Doctor actually found my FMD.”

5. “My primary care doctor heard the abnormal sound in my right carotid artery. She sent me to a vascular doctor, and he treated me as having stenosis due to what he thought was plaque. When the next ultrasound showed the distinctive FMD beads, he sent me for the angio which showed FMD in both carotids, renals and a brain aneurysm.”

6. “I had a bad headache that wouldn't go away. My doctor thought it was sinusitis, and gave me antibiotics and Imitrex. I woke one morning, still with throbbing headache then eye swollen. Then I noticed pupils were uneven, and went to see my doctor who said looks like Horner's syndrome. I was sent to neurologist two days later who sent me for imaging, where they found a total occlusion in left carotid. I drove to ER (DUH!), and was rushed into cath lab for angiogram where they saw the artery STILL DISSECTING… during which time they also discovered both internals had FMD.”

7. “I had a subarachnoid hemorrhage followed by a stroke (or vice versa) four and a half years ago that left me almost dead and with brain damage...”

8. “After having kidney stones a few times and seeing two different doctors due to high blood pressure despite being on meds for years (neither could figure out why or the cause), I finally went to a doctor in Chicago who said, ‘I want to run one test; I think I know what it is.’ Sure enough, after two years of wondering what was wrong with me, one test, an MRI showed FMD in my renal arteries. I had an angioplasty and immediately my BP was normal. I’m still on meds and will watch since it is known to come back. I am so grateful to my doctor.”

9. “Mine was discovered by having uncontrollable high blood pressure. I think the highest was 220/120. After being treated and misdiagnosed for anxiety and blood pressure meds that weren't effective, my primary care doctor heard the bruit in my abdomen. Looking back, I believe I had the symptoms for many years. Thankfully, I was finally diagnosed before dying from an aneurysm or stroke… which happened to my mom.”

10. “Mine was due to symptoms of TIA-like events. I think my mom had undiagnosed FMD which led to successive and repeated TIA's and dementia—my biggest fear in this.”

11. “The string of beads was seen during a follow-up cerebral angiogram from having multiple dissections stented and an aneurysm coiled and then recoiled and stented.”

12. “Mine was accidental. After a week in the hospital with no explanation for my severe headache, Horner's syndrome, and neck pain...they were preparing to release me with diagnosis of migraine. An intern was going over my head shots and saw what looked like a dissection. They ordered more tests and found multiple bilateral internal carotid dissections. My actual doctor never told me it was FMD. Luckily, the intern did. Follow-up at Cleveland Clinic found it in my vertebrals and renals as well as the carotids. I should add that I had the headache (worst of my life) for 6 weeks before the diagnosis. I saw my local doctor about four times before I drove myself to Chicago and went to the emergency room. My doctor kept saying it must either be a migraine or sinus infection. Two weeks of antibiotics, and several different pain meds—I knew something was wrong, but the doctor wouldn't listen.”

13. “My daughter’s was discovered when she was 27, after a couple of years at a blood pressure clinic on various BP meds (not working). She eventually saw a young doctor (just out of training) who sent her for MRI and it showed up on that. The (old) consultant that she had been seeing wasn't happy at ‘the waste of money’ spent on the imaging and then he saw the ‘very rare’ FMD reported by the radiographer!”

14. “I was sent to a kidney specialist due to very high blood pressure and being on eight meds. Since I am diabetic, the specialist thought I may have kidney damage due to that. The ultrasound and CTA came back normal. The specialist wanted an angiogram done due to it being the gold standard, and that’s how the FMD was found.”

15. “Mine was discovered when I crashed on the table having a pin put in my ankle. The surgeon told my husband he thought I had FMD. It was confirmed on the first day of my second trimester when I had a renal plasty. I had pathological confirmation about a year later when a renal bypass failed. It was quite a whirlwind.”

16. “Visual disturbances followed by a week-long migraine two months in a row sent me to a neurologist who at the end of the exam listened to my carotids and told me, ‘You need to go to the hospital right now...there's no pulse in the right side of your neck.’ And so it began...”

17. “I had what I believe were multiple TIAs from the age of 15-25, and doctors just called them migraines. Finally went to the ER after symptoms lasted longer than usual, had an MRA, and got their attention. I went from having a bed in the hallway to the Neuro ICU in 2.5 seconds! One dissected carotid, the other up to 90 percent occluded due to FMD.”

18. “Mine was found after a TIA. I had slurred speech and left side weakness. This is unusual unless your speech is on the right side of your brain, which only 10 percet of the population has. An interventional radiologist found this rare and ordered a CT angiogram for the lower arteries and found the string of beads in my pericardial vertebras. There is nothing that can be done for this location because of location to spine and spinal cord. Only in a life threating situation would intervention be done. This is my greatest fear. After this finding, further Doppler ultrasounds were done and I have right and left tortuous carotids, and a rubber band like closing in my right renal artery.”

19. “I had high BP since my early twenties; it took two decades before I was diagnosed. What lead to my diagnosis was dizziness, visual problems, abrupt inability to run distances... I have widespread FMD—renal, femoral, carotid... I also had severe abdominal pain for two decades with extensive work, but no one looked at my vascular system. When I was diagnosed with FMD, they finally saw the occlusion of the celiac artery. Funny how a bypass can take care of years of living with severe pain!”

20. “I've always had chronic chest pain...very athletic when "younger" ...running many miles, training for marathon, etc. One day, chest pain was really bad (I fell into bleachers)! My doctor did an EKG which was abnormal, referred to a cardiologist who heard bruit over right kidney, then sent me for an angiogram which showed aneurysms and FMD in renal arteries. One aneurysm was large enough to be removed at UC/San Francisco. I guess I was in my early 50s then. I had a grandfather who died from brain aneurysm and a sister who had an aortic aneurysm.”

21. “I had the worst pain I ever had in head and neck. I could describe the pain in the back of my head as like contractions. I had CT and they found aneurysm. During the coiling of my aneurysm two days later, they found the FMD.”

22. “I was exercising and felt a pop in the back of my neck followed by a pulsating in my neck and then terrible head/neck pain. Long story short...I landed in the hospital for 32 days and had a double stent put in my right carotid artery, four arterial dissections w/ multiple pseudoaneurysms.”

23. “Mine was discovered after a TIA with left-sided weakness and slurred speech. A CT angiogram was done that showed FMD in both pericranial vertebral arteries.”

24. “Mine was found after begging my GP to refer me to a nephrologist. Instead she kept changing or increasing my blood pressure meds. I finally took the bull by the horns, and had my Deputy Sheriff husband (in full uniform...gun toting and all) and HE made the demand. A week later I had an appointment with a specialist near Cincinnati, Ohio. The very next day I was having balloon angioplasty on an 85 percent right renal (intimal) occlusion. But, the doctor never said anything more than to have annual angios done for the renal arteries. This was in 2005. I have a GP now who, even KNOWING I have FMD actually said to me "so tell me again, what is FMD?" Needless to say, I have a new GP!!!!!!”

25. “I was at Canada's Wonderland when I had chest pains. I believe it was a miracle that I didn't go on any rides, because two weeks before that I had a hernia fixed. I had chest pains all day then about 3 p.m. I asked for help. They took me to major hospital then transferred in the morning to have an angiogram where the doctor said I had suffered a heart attack, and he told me that I had a kink in my artery and fixed it with two stents. Two years later my cardiologist was at a conference and shared my story with another doctor and he wanted to see me. He was 95 percent sure it was FMD. Long story short, this Jan. 2012 he confirmed I have FMD in both renal and coronary arteries. I'm very blessed to have this doctor, who is one of only two that study FMD in Canada. And yes...I've got my heart to stop racing with a beta blocker. But this past four plus months have been really tough with no energy, tired, and feeling crappy!”

26. “My BP continued to rise and the doctor wanted to add more meds. I was complaining of fatigue and just not feeling well. He also said I was depressed! I got angry and told him I am not depressed, I can't do what I normally do because of the symptoms, the symptoms were not depression. He said there is a test for my kidneys but he KNEW I didn't have a problem with my kidneys! I told him do the test. If nothing is there, I will take all his meds and the anti-depressant too. They did the test. The day after the test I was in the doctor office again, now I had pneumonia. He was very kind and gentle. I said I know it might be too soon, but did you get the test results on my kidneys? The tech doing the test wouldn't let me see the screen. He said we will talk about that, let’s take care of your pneumonia. That was when he said my artery was blocked, and that is why my BP spiked, I was tired, and my resistance was low. I was sent for an angioplasty and noticed the techs looking at each other like something was wrong. In recovery, the doctor came in, (my family was there), and said I had FMD.”

27. “Mine was found during an MRI for yearlong migraines in Dec. 2009. I obviously had it for many years before it was discovered. I had spent over a year not working due to daily migraine (dark, quiet house required). I had already undergone multiple CT scans etc. during that time—a relief to finally find out why I had the headache pain, blood pressure issues, whooshing, neck and chest pain, etc. (By the way, two doctors thought the whooshing was from a "heart murmur.") I underwent an angiogram, but they could not stent either carotid as one was already occluded and other not yet at stage to stent. I had gone to various neuros who seemed to think I was scamming for drugs or something before I insisted that my PCP do an MRI... I'm one of the lucky ones—I am back to work for now, although I had to change fields as I cannot think well enough to continue in accounting.”