Tangled in the Great Unknown

With so many developments in diagnosing disease, why do so many people-especially women spend years unraveling medical mysteries? 

- MERYL DAVIDS LANDAU

It was nearly a decade ago when Shekita Green first experienced severe nerve pain, followed a month later by dizziness, nausea, and vomiting. Shekita, now 38 and living in Spring, TX, went to the ER several times, but at each visit the doctors ran the same basic tests and came up empty. The hospital finally referred Shekita to a neurologist, who was certain that she had vertigo, a benign condition of periodic dizziness. Shekita tried her best to live with her symptoms despite the eye twitches and balance problems that periodically caused her to fall. Then, seven years after her first symptoms appeared, her legs started to go numb and the vomiting resumed; she dropped 20 pounds in two weeks.

Shekita knew she was suffering from something more serious than vertigo. Doctors "kept thinking I was overreacting, but I was so desperate for a diagnosis," she says. During her fifth hospital visit, Shekita was finally given an MRI. That test, along with bloodwork and spinal fluid analysis, led to the correct conclusion: Shekita had the rare autoimmune disease neuromyelitis optica spectrum disorder (NMOSD). Physical therapy and medication now help keep her symptoms in check, but her bladder and bowels have been severely damaged and she needs a wheelchair to get around. Shekita is convinced that her disability wouldn't be as bad had doctors looked more closely early on. "If I had been properly diagnosed when they saw obvious signs of neurological effects, I would have gotten on a preventive medication and wouldn't be where I am now," she says.