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

Just don’t try to generate your own diagnoses, cautions Marie Savard, MD, an ABC News medical contributor and author of How to Save Your Own Life: The Eight Steps Only You Can Take to Manage and Control Your Health Care. Online information helps you pose smarter questions to your doctor, but he’s much better qualified to piece together the information.

At your doctor’s appointment, you’ll also need to list all the medications (and supplements) that you take or have recently taken. Unexplained symptoms frequently stem from a reaction to a drug, even one you’ve been on for a while, says Abbie Leibowitz, MD, chief medical officer of Health Advocate (healthadvocate.com), a firm in Plymouth Meeting, Pennsylvania, that helps patients navigate the health care waters.

But the best information you can give a physician is your personal and family medical histories. “Up to 80 percent of a doctor’s determination comes from your history, not from tests done the day you’re in the office,” Savard says. Be ready to describe all the major conditions you have ever had, even if they are long in the past or do not seem associated with your current symptoms. Bring to your appointment important test results from any related prior illnesses.

And make sure to tell your physician about conditions your relatives have suffered from. Rare diseases often go undiagnosed, but if your doctor knows that one runs in your family, he will be much more likely to consider it a possibility.

Step 2 Prod Your Doctor
When symptoms don’t add up to a ready diagnosis, physicians sometimes suggest that an ailment is psychological or stress related. But don’t let your doctor dismiss your complaints so quickly, says Pamela Hops, MD, a family physician at New York City’s Continuum Center for Health and Healing. “Sometimes psychological issues do present themselves physically, but the doctor shouldn’t assume that’s the case, especially if you feel in your gut that something else is wrong,” she says. Some symptoms, says Hops, can indicate a serious condition and always call for additional testing: prolonged fever, unexplained weight loss and night sweats that aren’t associated with menopause. Night sweats, for example, can indicate an infection or a possible cancer or may be a side effect of certain diabetes drugs.

If your doctor is baffled, suggest he consider conditions that are known for being overlooked. (See 5 Diseases Doctors Often Miss) Take, for instance, Lyme disease, which sometimes surfaces in the form of vague and ordinary symptoms. Stephanie Smith, 36, an asset manager from Newport Beach, California, suffered for a decade from joint pain, fatigue, insomnia and heart palpitations before she was diagnosed with the disease, which is primarily a problem in the northeastern U.S., not in her home state. When one doctor suggested her troubles were due to stress, Smith (who asked that her real last name not be used) quit her high-pressurejob,but she continued to deteriorate. “I began to think my symptoms were normal age-related issues, and eventually I stopped trying to get a diagnosis,” Smith says. Then one day she described her condition to her aunt, who’d once had Lyme disease and recognized the symptoms. After a positive test, Smith started using the antibiotics and immune-boosting supplements that returned her to health.

Step 3 Take a Break
If your doctor has run important tests and ruled out serious conditions but still hasn’t determined what’s wrong with you, it may be time to put your quest for a diagnosis on hold. “You don’t want to push your doctor into giving you drugs or other treatments that may not be appropriate, because that can lead to other complications,” Savard says. She suggests waiting for three months, or whatever time frame you and your physician agree on, to see if your body can heal itself.

First published in the March 2012 issue

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