Millions of Americans Suffer From a Disorder They've Never Heard Of

11/24/03    Portland, Ore.

Local patients find relief through support group, OHSU drug study

Shortly after Newt Hagar was married, his wife took him aside and said, "We have a problem in the bedroom." As it turns out, Newt's legs were jerking every 20 to 30 seconds during the night, keeping his wife awake for hours. Newt is one of 20 million Americans who suffer from one of the most common, yet undiagnosed and unrecognized disorders: restless leg syndrome (RLS).

People with RLS have an irresistible urge to move their legs or arms. Often this urge is accompanied by an uncomfortable sensation described as a creeping, itching, pulling or tugging sensation deep within the leg.

Most people don't understand the symptoms of RLS enough to describe it to their physician, and many physicians often overlook and misdiagnose RLS symptoms as anxiety or depression, according to Robert Sack, M.D., medical director of the Oregon Health & Science University Sleep Disorders Clinic and professor of psychiatry in the OHSU School of Medicine.

"Chronic sleep deprivation and insomnia are often the presenting symptoms and may affect a patient's ability to concentrate at work, and prevent them from participating in social and recreational activities. There are no laboratory tests that can confirm an RLS diagnosis, but a thorough examination and a detailed medical history can rule out any underlying conditions," said Sack, who added that RLS also can cause mood swings, which can affect personal relationships.

Many RLS patients, like Newt, also experience periodic limb movement disorder (PLMD), an involuntary leg jerking that occurs off and on during the night while they're sleeping. "With PLMD, they may not be fully awake, but their sleep is interrupted every 20 to 30 seconds for hours," Sack said.

According to Newt, the solution to his frequent leg jerking was simple: "I was taking my medication, but not enough, so I increased my dosage. We also bought two single beds, put them together and made one king-sized bed."

Newt, 84, group leader of the Portland RLS Education and Support Group for the past three years, began his struggle with restless leg syndrome in 1988 following gall bladder surgery. Newt was fortunate that his family physician recognized his frequent leg jerking as symptoms of RLS and referred him to a neurologist, who initially prescribed Sinemet, and more recently Mirapex, two drugs commonly used to treat Parkinson's disease.

No drug has yet been approved by the Food and Drug Administration for the treatment of RLS, but several FDA-approved Parkinson's drugs, including Sinemet, have long been the first line of treatment. Unfortunately, the majority of patients who use Sinemet experience a side effect known as augmentation in which relief from nighttime symptoms is achieved, but symptoms begin to develop earlier in the day.

Sack currently is enrolling patients in a phase III clinical trial of the Parkinson's drug Ropinirole (IRB No. 7891). Ropinirole has shown promise in alleviating the restlessness, involuntary leg movements and sleep difficulties associated with RLS, without augmentation.

Although RLS is most often diagnosed in middle-aged people, many patients can trace their symptoms back to their childhood. Diane Ayala, 6l, a member of the RLS support group from Estacada, Ore., said she's had RLS for as long as she can remember.

"During school, I'd break my pencil so I could walk to the pencil sharpener, or I'd let it roll off my desk. I asked to go to the bathroom a lot; you'll do anything to move," said Ayala. Both of her daughters, aged 41 and 38, and her son, 44, have symptoms of RLS, according to Ayala.

"It's common for RLS to run in families, and researchers are looking for the gene or genes that may be responsible," said Sack. "The latest research findings indicate iron deficiency and anemia also are associated with symptoms of RLS, so testing for iron deficiency should be part of any RLS evaluation."

The symptoms of RLS worsen in the evening when the patient is at rest or lying down. Prolonged sitting - on an airplane, at a movie, in a car, at a desk - also can trigger symptoms. Walking or moving the affected limb can provide relief, but symptoms often recur once the activity ends.

Nancy Almstrum, 45, Vancouver, Wash., nearly lost her job because she couldn't sit still. Her physician didn't understand RLS, according to Nancy, and put her on several different medications for "everything else." After reading about RLS, Nancy recognized the symptoms and attended a meeting of the Portland RLS Education and Support Group.

"The support group was nothing short of a miracle," Nancy said. "They've done a lot for me and are the primary reason I'm still in my job today."

Newt and the RLS support group provided Nancy with information, which she shared with a neurologist who immediately took her off all other medications and gave her the Parkinson's drug, Mirapex. "I got instant relief," she said.

The Portland RLS Education and Support Group, which is supported by the national Restless Leg Syndrome Foundation, meets every other month on Saturday afternoons. Health care professionals, including psychiatrists, neurologists, pharmacists and dieticians regularly speak to the group, which has 135 active members. Patients interested in learning more about RLS or the support group are encouraged to call or e-mail Newt Hagar at 503 646-8925 or Patients interested in participating in OHSU's RLS clinical trial, should call 503 418-4679 or fax 503 494-1209.