Medical Mystery: When You Can't Get a Diagnosis

Something’s wrong with you—and no doctor can pinpoint what. Here’s how to handle this frustrating but surprisingly common situation 

By Meryl Davids Landau
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Photograph: Yasu + Junko

Her symptoms came on slowly but kept getting worse. Within a few months, Susan Warm’s fatigue had turned into debilitating exhaustion, her aches had graduated to serious pain, and her periodic sweats had developed into waterfalls that plastered her hair to her head. Warm, then 45, consulted several doctors, each of whom ran a variety of tests and declared she was suffering from nothing worse than the symptoms of menopause. “I thought I was going crazy, because I felt so bad for no explainable reason,” recalls Warm, a customer-marketing specialist in Pasadena, California.

Eight months into her ordeal, Warm persuaded an ER doctor to admit her to the hospital. There, one of the attending physicians touched her drenched arm and said, “I haven’t felt sweats like this since I last treated tuberculosis.” Sure enough, even though Warm didn’t have the classic TB cough, she tested positive for the disease. (The infection was in her bloodstream, not her lungs.) Once Warm took the appropriate antibiotics, she was cured—at last.

Americans believe that diagnosis is the cornerstone of medical care: You go to a doctor, who labels your problem and prescribes a treatment that makes you well. But what if the process gets stuck at the labeling stage? “We have a fantasy that as soon as we describe our symptoms, the doctor will know what is wrong with us. But the reality can be much more complicated,” says Evan Falchuk, president of Best Doctors (bestdoctors.com), a Boston-based company that helps corporate employees get second opinions from top physicians. You don’t expect the doctor to be stymied, particularly after extensive testing. But failures to find a diagnosis do occur—and while no one knows exactly how often, 10,000 patients contact Falchuk’s firm for help every year.

TV shows like House contribute to our misconceptions. Although Dr. Gregory House is portrayed as an expert in diagnostic medicine, such a medical specialty exists only in scriptwriters’ imaginations. In real life, analyzing what’s wrong with us falls to our primary care physician or to the specialists we consult. In most cases, by relying on our symptoms, medical history and test results, doctors are able to figure out our problems. But MDs typically look for common scenarios; people with rare diseases or unusual presentations of prevalent conditions (like Warm’s TB) can fall through the cracks, notes Marianne Genetti, executive director of In Need of Diagnosis (inod.org), a nonprofit in Orlando, Florida, that assists patients who have not been able to put a name to their complaints.

If that’s your situation, don’t give up: It’s essential that you persistently advocate for yourself. One way to do that is to actively help your doctors find the correct diagnosis.

Here, five steps you can take.

Step 1 Do Your Homework
The more information your doctor has, the better he’ll be able to treat you. In the days leading up to an important doctor visit, keep a pad of paper handy and jot down your symptoms as they occur so you can read the list to your practitioner. In addition, do a little digging on the Web, spending time on reputable medical sites such as MayoClinic.com and Health.gov to gain insight into how your symptoms might fit together. For instance, you may have gotten so accustomed to feeling thirsty all the time that you didn’t even think to bring it up during your last visit. But if an online check reveals that the symptoms you did plan to mention—fatigue and headaches—often go along with increased thirst in diabetics, then you’ll realize you should be telling the doctor how frequently you need a drink of water.

Or maybe you have a funny bump on your hand. By going online, you discover that one possible cause is a marine parasite. Now you remember that you swam in the ocean during your last Caribbean vacation, so you’ll be sure to tell the doctor.

First published in the March 2012 issue

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