Why Doctors Misdiagnose Autoimmune Diseases

Even specialists often struggle to make sense of the puzzling symptoms that come with these slow-moving disorders

David H. Freedman
Elemental

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A close up of a woman’s arms and hands with vitiligo.
Photo: MarijaRadovic/E+/Getty

TThe 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…

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David H. Freedman
Elemental

David is a Boston-based science writer. The most recent of his five books is WRONG, about the problems with medical research and other expertise.