FMD – The unknown disease

The "string-of-beads" feature in med...

The “string-of-beads” feature in medial fibromuscular dysplasia. The sign is caused by areas of relative stenoses alternating with small aneurysms. The diameters of the aneurysms exceed the normal diameter of the artery. The sign is characteristic of medial FMD. A similar bead appearance may be seen in perimedial FMD, but the diameters of the beads do not exceed the normal diameter of the artery [10]. Note the involvement of branch renal arteries. (Photo credit: Wikipedia)

Note: A Long but very informative blog.  It could save a life.

FMD, not to be confused with FML, (Although if diagnosed with it one might tend to say that) is short for fibromuscular dysplasia.  For the most part, it is rather unknown and falls in the category of ‘rare diseases’.

Fibromuscular dysplasia affects mainly white women between the ages of 20 and 55.(So either there’s something very concerning about my sexual classification AND race that I don’t know about or I am even unluckier than previously thought because I have FMD).  Because it afflicts mostly women, it has been theorized that hormones may play an important role in its development.  I know what you are thinking, don’t even go there!

“Fibromuscular dysplasia (FMD) causes vessel narrowing and blockages throughout the arteries. An abnormal growth of the fibromuscular layer of cells lining the blood vessels produces a characteristic “string of beads,” or rings of scarring.

“Fibromuscular dysplasia can affect the arteries leading to the kidneys, where it causes renal failure, and the carotid arteries in the neck, where it leads to stroke,” explains Jeffrey W. Olin, DO, Professor of Cardiology and Director of Vascular Medicine and the Vascular Diagnostic Laboratory, who considers fibromuscular dysplasia his highest clinical interest. “It’s often misdiagnosed and mistreated.”

Fibromuscular dysplasia predominantly affects young women between the ages of 20 and 50.

“It takes young women in the prime of their lives, and it’s just devastating,” Dr. Olin says.”

This disease is rarely diagnosed and many doctors have little or no knowledge of it, which makes it difficult and frustrating for the patient.  So don’t be alarmed if your doctor has that blank look in his eyes right before accessing Google and Wikipedia. I knew nothing about FMD until I was diagnosed while investigating the cause of my headaches and puzzling high blood pressure two years ago.  The MRI and CT scans showed my arteries were ‘beaded’ and had scars from previous tears.  Treatment was high blood pressure medications and blood thinners.

(A few months ago my headaches returned, I had an MRI  which showed that my left carotid artery had a new tear and had also narrowed about 50%.   Regular symptoms now includes drooping in one eye).

Fibromuscular Dysplasia is ever so slowly gaining publicity, thanks in part to an awareness group called The Fibromuscular Dysplasia Society or FMDSA.  Currently, they are collecting information from people with the disease to build up a database.  This would be great for diagnosing and treatment.  There is no cure for FMD.

This blog is to bring awareness to this disease.  It’s something to get your doctor to look for if you are experiencing any related symptoms and you are a white female 20-55 or unlucky like me.  It never hurts to know.

Here is a bit of information on this disease.  You can also read more about it here.

FMD of Renal Arteries (Kidney):

  • High blood pressure [>140/90 mmHg]
  • Abnormal kidney function as detected on blood tests
  • Flank pain from dissection or infarction of the kidney
  • Kidney failure (rare)
  • Shrinkage (atrophy) of the kidney

FMD of Carotid Arteries:

  • Bruit (noise) heard in neck with stethoscope
  • Swooshing sound in ear
  • Ringing of the ears
  • Vertigo (room spinning)
  • Dizziness
  • Headache
  • Transient ischemic attack
  • Stroke
  • Neck pain
  • Horner’s syndrome
  • Dissection

A person with severe carotid FMD causing severe narrowing or a tear in the carotid or vertebral artery may have neurologic symptoms involving the facial nerves (drooping of the eye lid, unequal size of the pupils, for example), stroke or transient ischemic attack. People with carotid FMD have a higher risk for aneurysms of the arteries in the brain, (intracranial aneurysms). Bleeding in the brain (intracranial hemorrhage) may occur if an aneurysm ruptures, and it is important to identify and treat brain aneurysms early to prevent this.

FMD involving the arteries that supply the intestines, liver and spleen with blood (mesenteric arteries) can result in abdominal pain after eating and unintended weight loss. FMD in the arms and legs can cause limb discomfort with exercise or can lead to unequal blood pressure in the arms.

Who has FMD?

FMD affects women far more commonly than men, although men and children are affected with the disease. In children with FMD, the disease seems to more commonly present with significant narrowing’s rather than tears of arteries and also seems to involve the arteries to the kidneys and intestines more commonly than the carotid vessels.

How common is FMD?

It is difficult to determine how common FMD is in the general population. This is due to several reasons. Individuals with mild FMD disease are often asymptomatic and so the disease often goes undetected. Most studies examining the prevalence of FMD have looked at specific patient populations in whom individuals may have already suffered from serious consequences of the disease, such as patients with carotid dissection.  Since there is a delay in diagnosis of FMD among FMD patients and since there may be decreased awareness of signs and symptoms of FMD among health care providers, it is likely that FMD is underdiagnosed and is more common than previously thought.

How can FMD be diagnosed?

In order to diagnosis FMD, a test must be done to image the blood vessels. There are many options for imaging the arteries, including specialized blood vessel ultrasound known as duplex ultrasound,   a CAT scan of the arteries which is obtained after a dye is given through the veins,  or a special type of MRI. In many cases, the diagnosis of FMD requires that a procedure known as an arteriogram be performed.  Arteriography is a procedure that is performed by a radiologist, vascular surgeon, cardiologist, or vascular medicine specialist with appropriate training. It involves inserting a wire into or near the affected artery and injecting contrast material, a dye that can be detected by an x-ray machine. The individual is usually awake during an arteriogram procedure although medications may be given to keep her or him comfortable. This outpatient procedure usually lasts from one to two hours with a recovery period of up to six hours (this varies widely).  The experience and expertise available at your medical institution will play an important role in what diagnostic options are available to you.

 What kind of treatment is there for FMD?

There is no cure for FMD. Treatments are focused on managing symptoms and complications of FMD, including high blood pressure and headaches.  Antiplatelet medications, such as aspirin, may be prescribed along with medications to treat high blood pressure (anti hypertensives).  Many patients with FMD suffer from headaches, and a number of medications are available to help control and prevent headaches.  All patients with FMD who use tobacco should be encouraged to quit.

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About Enigma

I am just a normal guy with an abnormal way of thinking. Proud father to three remarkable boys and devoted husband to an angelic wife who knows everything and does everything to perfection. So I am BLESSED!
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5 Responses to FMD – The unknown disease

  1. Meig says:

    Is there someone you know affected by this disease as of recently??

  2. Please connect with FMD Chat, a global peer-to-peer support group for those affected by fibromuscular dysplasia! Visit fmdchat.org and facebook.com/fmdchat. Best of luck to you on your journey.

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