Have a Story to Tell? Had a medical error?

This blog is about patient safety, medical malpractice, staying healthy, and preventing future errors. Help & empower someone else, Teach a lesson, Bear witness, Build our community - Email us or call 781-444-5525.

Frustrated with a health problem?

Need an ally in your health crisis? Call 781-444-5525, or learn more.

Sunday, September 16, 2007

She battled for 50 years: Restless Leg Syndrome

A creeping and crawling sensation used to keep Sheila Connolly awake for hours, and she only felt relief by standing or walking.

"It took me a long time to find out what it was," she said. "My primary care physician did not know what I had. I was sent to one neurologist who knew what I had, but did not know how to treat it. Then I was sent to a third neurologist. This [occurred] over a course of many years."

Sheila, now 67, battled the disorder for 50 years. RLS is a disorder that disturbs a person's sleep pattern. It is often under- and misdiagnosed.

With about 12 million diagnosed cases in the U.S. alone, restless leg syndrome is slowly,but surely becoming a more widely recognized condition.

"Some people will get it once a year when they take a long plane ride, some women will get it only just before their period, some people will get it just if they are very tired," said Dr. John Winkelman, Director of Sleep Health Centers at Brigham and Women's Hospital in Boston. "And then there are people who get it predictably, who get it once or twice or four times a week or unfortunately even every night."

Doctors don't know exactly what causes RLS, though they know that certain dopamine levels, low brain-iron levels, and a person's genetic make-up are contributing factors.

Medication has helped to relieve Sheila's symptoms. Other patients find that changing their daily routines and being aware of certain triggers can help.

Advice: If you feel sure something is wrong, be persistent in looking for a diagnosis. A patient advocate may help.

Read another difficult neurologist's diagnosis story, or read more from the source article by Paula Rizzo.

No comments: