Why Doctors Misdiagnose Autoimmune Diseases
Even specialists often struggle to make sense of the puzzling symptoms that come with these slow-moving disorders
The patient came to her doctor with a low-grade fever, some achiness and fatigue, and a touch of diarrhea. The doctor told her it was probably a mild case of the flu. But weeks later the symptoms hadn’t gone away. The doctor ran some lab tests, but the results didn’t clearly indicate any problems, and he insisted there didn’t seem to be anything physically wrong with her. Still feeling off, she eventually saw other doctors. Yet over years of continuing and even slowly worsening symptoms, none of these doctors were able to tell her what was wrong. Finally, 15 years after she first felt ill, a specialist gave her the diagnosis: She had lupus erythematosus, the most common form of lupus — an autoimmune disease, where the immune system drives the disease instead of protecting against it.
If only that story were unusual. While 1.5 million Americans have been diagnosed with lupus erythematosus, experts believe the number of undiagnosed cases is higher. And lupus is just one of more than 100 autoimmune diseases affecting nearly 25 million Americans, diseases that together present a challenging and often frustrating path to diagnosis for doctors and patients alike. “These patients often get sent on a long journey before they get an answer,” says Robert Lahita, M.D., the chairman of medicine at St. Joseph’s Healthcare in Wayne, N.J., and the autoimmune specialist who finally diagnosed that lupus patient. “Some physicians will tell them it’s all in their head. It’s not, and they can be miserable for years until they get diagnosed.”
Autoimmune diseases take hold when the immune system — for reasons that still aren’t understood — start to mistake normal cells and tissue for a threat, and attack them as they would an invading infection. Some of the more common examples include rheumatoid arthritis, multiple sclerosis, and inflammatory bowel disease, in which the immune system attacks, respectively, the joints, the outside of nerves, and the intestinal lining or any part of the gastrointestinal tract.
Many autoimmune diseases can be debilitating, and can even lead to an early death. But it can take…