Synopsis: Restless legs syndrome, a neurological condition, strikes people at night, creating some of the worst sleep conditions known by any patients. Experts discuss identifying and treating the syndrome.

Host: Lynn Holley. Guests: Karla Dzienkowski, Executive Director, Restless Legs Syndrome Foundation and parent of daugther with restless legs syndrome; Dr. William Ondo, Professor of Neurology, University of Texas Health Science Center, Houston and advisory board member, Restless Legs Syndrome Foundation

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16-10 Restless Legs Syndrome

Lynn Holly: Twelve years ago, when Ally Deezenkowski was 11-and-a-half, her mother, Karla, noticed that Ally seemed cranky, tired and moody all the time. Nothing unusual about that, she figured.

Karla Deezenkowski:  I just thought it was…here we are going through puberty. But when I got the call from the school saying Ally’s grades aren’t so good. What’s going on? I have an honor student and I started looking into it. Then I noticed that she was really excessively tired in the afternoon. Finally she started walking down stairs saying I’ve got this weird feeling in my legs, Mom, and I have to get up and walk at night. But when I walk down the steps and by the time I get there to tell you, it’s gone. I don’t know what’s going on and why this is happening.

Holly: It took the Deezenkowski’s two years, seeing doctor after doctor, to get a diagnosis.

Deezenkowski:  Five specialists, five different specialty areas. They just didn’t know what it was. At one point I was told there’s nothing we can do for you. You need to go home and deal with this.

Holly: Finally, a sleep specialist diagnosed Ally with restless legs syndrome, also known as Willis-Ekbom disease.

Dr. William Ondo:  Restless legs syndrome is a fairly common neurologic condition that is clinically defined. Patients have to have an urge to move the leg, not just pain, but an actual urge to move the leg. It has to be worse in the evening time and relatively better in the morning. And it also has to be worsened by physical and mental inactivity and at least transiently improved by physical activity.

Holly: That’s Dr. William Ondo, professor of neurology at the University Of Texas Health Science Center in Houston and an advisory board member for the Restless Legs Syndrome Foundation.

Ondo:  There is a true circadian pattern to it. It’s not just a function of the fact that people are less active at night and are trying to go to bed and lying down still, but those things do make it worse and moving about does at least transiently improve the symptoms. But as it gets more severe and becomes more and more frustrating, it can significantly impair sleep in these patients. In fact, studies have shown that patients, when it’s severe, have among the worst sleep of any disease that we know of. It certainly can be associated with frustration, depression and a number of other psychiatric manifestations of the disease as well. But simply the frustration of every time you get tired and you want to go to sleep, but you can’t, it certainly would impact quality of life.

Holly: Ondo says restless legs syndrome is a little more common in women than men and can happen at any age, though it tends to get worse past age 40. About 10 percent of people of northern European ancestry have R-L-S to some degree… but it’s a problem for only two to three percent. As you might expect from that… there’s a strong genetic component.

Ondo:  There are six genes now that have been published that all confirm a risk for RLS. There’s not one gene that says 100% yes or no you’re going to have this. But if you have one of these genes you have, for example, a 50% increased risk of having it. If you carry all six of these genes you probably have a 90-95% likelihood of having restless legs syndrome. That being said there are certainly people that don’t seem to have any genetic predisposition for RLS, and there are a number of other medical associated things that have been identified. Patients on dialysis from kidney failure are much more likely to have restless leg syndrome. Pregnant women during their third trimester of pregnancy are much more likely to get RLS. We’ve seen that if you are very iron deficient you are more likely to get restless leg syndrome. This is the case even when serum iron, or iron tests done by blood are absolutely normal. This has been a very consistent pathology, or abnormality seen brain, the patients with restless leg. There’s a number of other things that have been identified. There are some alterations in the way the brain uses and metabolizes dopamine, which is one of the common chemicals in RLS and one of the targets for treatment of RLS. There’s some abnormalities in something called hypocretin orexin, there’s abnormalities in glutamate. There are a number of different abnormalities that are seen on a pathologic basis and a physiologic basis in the central nervous system of people with RLS.

Holly: Many people with restless legs syndrome will do almost anything they can think of to try to stop the pain and restless sensation.

Ondo:  They get up, they walk, they stretch their calves, they may exercise at night, they may do things like with sensory stimulation like hot baths or cold baths. So these sorts of things temporarily improve RLS. The problem is, these sorts of activities are often not all that conducive to relaxing and going to bed, which is when the symptoms are occurring. In more drastic cases you do hear some pretty astounding stories of people hitting themselves with baseball bats and so forth to try to improve the symptoms on their own.

Holly: A survey released by the Willis-Ekbom Disease Foundation, sponsored by Xenoport, shows that families are also severely affected by the disorder. About a third of spouses can’t sleep in the same bed as a restless legs patient. About half of patients avoid going to the movies or concerts because they can’t sit for that long. And about a quarter of patients avoid travel. Karla Deezenkowski says Ally’s restless legs affected their family the same way.

Deezenkowski:  Just going out to a social event, going to a concert, to the movies, to the theater, even going to dinner – it took planning. When it was really bad or Ally was having a bad day we were the family walking the parking lot to try to get her some relief so that she could sit down and enjoy her meal. That’s kind of how it is when you have RLS in your family; you just start making accommodations to make it work. So we would maybe go to the movies earlier in the day instead of at night when her symptoms would take up. RLS is sort of…if you think of it this way, it’s mostly a 6p-6a kind of feel, so you kind of work in the night shifts. That’s why they call people with RLS nightwalkers, because they are up walking at night. So we would schedule things around her symptoms so that she would be able to enjoy life, be part of their family to do things together.

Holly: She says once Ally was diagnosed and treated, it made a world of difference.

Deezenkowski:  Her life improved dramatically; her grades went up, she was able to function, go to school, participate in school. She was a completely different person. In her words, she said, “I didn’t know what I was missing, Mom.”

Ondo:  There are currently four drugs, which are FDA approved for the treatment of restless legs. Three of the medications pramipexole or ropinirole and rotigotine are dopamine agonists. These are medicines that mimic dopamine, okay? All three of these medicines were invented initially for the treatment of Parkinson’s disease. I will emphasize that RLS does not become Parkinson’s disease despite the fact that we use the same treatment for it. But they have been around for actually, you know, more than a dozen years now, at least two of them. The third FDA approved drug is called gabapentin enacarbil. It works in a totaly different way where it seems to deaden sensory fibers going up the spinal cord and into the thalamus of the brain. Opioid medications are narcotic medicines, although never typically a first line drug also can be fairly effective for RLS. And then giving very large doses of intravenous iron are also sometimes effective for patients with restless legs.

Holly: The key, Ondo says, is getting a diagnosis. You can find out much more information about restless legs syndrome through the foundation website,

Our production director Is Sean Waldron.

I’m Lynn Holly.

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