I had gone to the doctors too many times: Patient's research for misdiagnosed restless legs syndrome

Often patients begin doing health research because their own doctors don't seem to have the right answers. All her life, Lynne Kaiser, 44, of Plano, Texas, suffered from leg pain and poor sleep; her gynecologist told her she had "extreme PMS." But by searching the medical literature for "adult growing pains," she learned about restless legs syndrome and a doctor who had studied it.

"I had gone to the doctors too many times and gotten no help and no results," she said. She is now a volunteer patient advocate for the web site WhatIsRLS.org. The new doctor she found "really pushed me to educate myself further and pushed me to look for support.

Tara Parker-Pope’s Advice: Tell your doctor about your research.

Read another delayed diagnosis story.

Thanks to Tara Parker-Pope for the source article in today's New York Times.