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Every night, the patient tells a neurologist, he gets these creepy, crawly feelings in his legs as he starts to drift off to sleep. It's not pain, exactly, but an irresistible urge to move his legs. He gets up, does a few deep knee bends. That helps.

But as soon as the patient goes back to bed, the creepy-crawlies start up again. Sometimes, his legs start kicking periodically, too. So he gets up and walks, for hours, until exhaustion overwhelms his twitchy legs and frazzled psyche. With luck, he gets a few hours of sleep.

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"What have I got?" the frustrated patient asks. "I don't know," the doctor replies. "But I've got it, too."

Sad to say, this is a true story, told by a patient to Dr. John Winkelman, medical director of the Sleep Health Center at Boston's Brigham and Women's Hospital.

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Most people, including many doctors, have never heard of Restless Legs Syndrome, though this under-diagnosed neurological disorder ruins the sleep - and the quality of life - of an estimated 20 million Americans.

"But people are going to hear a lot more about this disorder in the next couple of years," says Winkelman, "because we now recognize how common it is and we're beginning to get some insights into its underlying causes."

Scientists now have a pretty good idea of what goes wrong in the brains of people with Restless Legs Syndrome, thanks to brain scans and autopsies.

In the brain, the substantia nigra, the caudate nucleus and the putamen, which control movement, appear to be somewhat deficient in iron. That may impair the ability of brain cells to make the neurotransmitter dopamine, says Dr. Wayne Hening, a neurology professor at the Robert Wood Johnson Medical School in New Jersey.

The result is creepy-crawly sensations in the legs and the urge to move the legs. These symptoms come on with rest or immobility and are relieved - transiently - by movement. Many people with Restless Legs Syndrome also have what's known as "periodic limb movements of sleep," uncontrollable kicking during sleep.

Though not fatal, Restless Legs Syndrome is a life-wrecker. It often runs in families, suggesting a possible genetic factor, and can start in childhood.

"Of all the disorders affecting sleep, this is the one that produces the most chronic sleep loss, year after year," says psychologist Richard Allen of the Center for the Study of Restless Legs at Johns Hopkins Bayview Medical Center.

For Mimi Lebien, 43, a self-employed medical historian in Covington, La., the worst part is the sense of "shame that comes with people who can't sleep."

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Lebien's struggle with the disorder began when she was 7 or 8, on a long family car trip when she made her brother and sister lie down on the floor of the backseat because "I needed to kick and kick and kick."

So what to do if you suffer from these symptoms? First, if your regular doctor can't help, contact a neurologist or sleep clinic. If blood tests show low iron in your blood, taking oral iron (ferritin) may help. (Don't do this on your own. If you take too much iron, you can develop a dangerous condition called hemochromatosis, or iron overload, which can cause cardiac and other problems.) If your blood test is normal, however, you may still be iron-deficient in the brain. In this case, oral iron probably won't help, but researchers are trying to determine whether giving RLS patients iron intravenously will.

The low iron levels that can lead to RLS can have several triggers, including kidney failure.

If iron supplementation and simple measures such as avoiding alcohol, caffeine and sleep deprivation don't help, the next step is to take drugs that boost dopamine activity in the brain. None of these drugs is likely to provide total relief, but if they help you get five to seven hours of sleep a night instead of two or three, that's huge.

Judy Foreman is a lecturer at Harvard Medical School.


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