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Misdiagnosed: What to do When Your Doctor Doesn't Know

Why patients suffer and what you can do to get help

Why Diagnoses Are Missed

Medical experts agree that diagnostics is a weak link in medicine. "Our nation's medical system is wonderful at crisis care but does not have a good record when it comes to diagnosis," says Marianne Genetti, executive director of In Need of Diagnosis (INOD), a Florida patient-resource organization.

"In medical school we're taught that the way to make decisions is to go with what is most common first." — Lisa Sanders, M.D.

Yale physician Sanders has identified three primary reasons behind the failure to diagnose: mistakes in how doctors think, overreliance on specialists and medical testing, and the human body itself, which can experience a multitude of ailments but has limited ways to communicate those ailments.

"In medical school we're taught that the way to make decisions is to go with what is most common first," Sanders says. "It's drilled into us: When you hear hoofbeats, think horses, not zebras. And that's great if you have what most people have. But that approach completely falls apart if you don't, and then determining a diagnosis requires unusual thinking."

Charmaine Frederick, now 59, is a perfect example. In 2002 the registered nurse from Orlando began falling down, her sense of smell diminished, and her handwriting became illegible — all common symptoms of Parkinson's disease. But because the disease usually emerges in much older patients, the dozen doctors she consulted ruled it out. Finally, Frederick made an appointment with Florida neurologist Ira Goodman, M.D., who noticed that she blinked only a few times during the office visit, a sure sign of Parkinson's. "If you're not really paying attention to what's in front of you, subtle things can just breeze by," Goodman explains. "Things are missed all the way up the medical chain, and you have to really climb the ladder to find the right specialist."

Yet with a price tag attached to every minute of a doctor's time, physicians spend less time with each patient than they used to, and they increasingly rely on tests to provide answers. When those tests are inconclusive or inaccurate, the patient and his or her physicians may find themselves traveling down the wrong treatment path. "There are lots of diseases that can look like something else," explains Sanders. "And that's where clinical judgment and experience are essential. Doctors see test results as coming straight from God. But just because a test gives you a yes or no answer doesn't mean it's right."

Next: Tom Hopper's medical mystery solved. >>

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