Scary but true: Most of us will experience at least one medical misdiagnosis in our lifetime, “sometimes with devastating consequences,” according to a new study published in the journal Diagnosis. Some 12 million Americans are affected in primary care alone.
No one’s saying it’s intentional, of course. Some conditions can be vexing for health care providers, if only because they look and act like other common diseases. Patients can travel a long, winding, and often expensive and disheartening road to finally arrive at the correct diagnosis. Here are four of the most commonly misdiagnosed conditions, their symptoms, and some recommendations on how to get to the bottom of them.
Symptoms:Painful pea- to marble-sized lumps under the skin that tend to enlarge and drain pus
Often mistaken for: Acne
A bad case of stubborn acne. That’s what people tend to think when cyst-like pimples begin to appear on their chest, armpits, groin, and buttocks. But even the worst case of acne is no match for hidradenitis suppurativa (HS), a chronic inflammatory skin condition that affects 1 percent of Americans.
Even though it’s a “fairly common skin condition,” it takes five to eight years, on average, to get a diagnosis, says Steven Cohen, MD, director of the Hidradenitis Suppurativa program and chief of dermatology at Montefiore Medical Center and the Albert Einstein College of Medicine in New York City. “Primary care doctors are unfamiliar with many dermatologic conditions and even dermatologists sometimes may have limited experience with HS,” he says. “That’s the main reason we find patients running from doctor to doctor.”
Irritable Bowel Syndrome
Symptoms:Abdominal pain, cramping or bloating that is typically relieved by having a bowel movement; excess gas; diarrhea or constipation (sometimes alternating bouts of both); mucus in the stool
Often mistaken for:Celiac disease, non-celiac gluten sensitivity, lactose intolerance
When a patient is referred to a gastroenterologist, it’s usually because that patient is experiencing chronic diarrhea, bloating, and abdominal pain. That trifecta of GI symptoms is, of course, seen in a number of conditions, including gastrointestinal malignancies and inflammatory bowel diseases, as well as irritable bowel syndrome (IBS). Throw in other conditions like food allergies and other adverse reactions to foods and it’s a wonder anyone with GI issues gets a proper diagnosis. It also explains why all of the above can get lumped in together under the umbrella of “IBS-like disorders.” They all look and sound a lot alike.
As researchers noted in a study, published in 2017 in the journal Gastroenterology and Hepatology from Bed to Bench, there are many conditions with different disease-causing mechanisms that are currently labeled “IBS.” But a true diagnosis of IBS can be made only after a patient has experienced symptoms for at least six months and discomfort at least three days a month for the previous three months.
Symptoms: Bullseye rash at bite site (though not always), accompanied by fever, chills, fatigue, body aches, headache, neck stiffness, and swollen lymph nodes
Often mistaken for: Mononucleosis, flu, chronic fatigue syndrome, fibromyalgia, meningitis
You’d think Lyme disease–a tick-borne illness transmitted by the bite of an infected deer tick–would be easy to diagnose if only because the likelihood of getting it is directly related to whether you live or spend a lot of time in heavily wooded areas where deer ticks thrive. Not so. Although Lyme disease is the most common vector-borne infection in the U.S., it is frequently misdiagnosed, suggests a study published in 2019 in the journal Open Forum Infectious Diseases. Over a 13-year period, researchers found that incorrect diagnoses and unnecessary antibiotic treatments were common among 1,261 patients who showed symptoms of Lyme disease.
Symptoms: Fatigue, fever, joint pain, and often a butterfly-shaped rash on the face that covers the cheeks and bridge of the nose or rashes elsewhere on the body
Often mistaken for: Rheumatoid arthritis, chronic fatigue syndrome, fibromyalgia
An autoimmune disease, lupus occurs when your body’s immune system attacks your own tissues and organs. The chronic inflammation caused by lupus can affect everything from your skin to your joints to your kidneys, brain, heart, and lungs. “Lupus can masquerade as many different conditions,” says Dr. Cohen. As a result, “it’s commonly misdiagnosed, and part of the reason is that specialists aren’t consulted.”
Indeed, a Lupus Foundation of America study of more than 3,000 adults with lupus found that the majority met with their primary care physician specifically to discuss their symptoms. And yet 46.5 percent were initially misdiagnosed. And more than half were told that there was nothing wrong with them or that their symptoms were psychological.
If you experience persistent symptoms, or things just continue to feel “off,” even after receiving a doctor’s opinion (or three), try not to lose heart. Pay attention to how treatments do or don’t affect your symptoms, seek new information and new opinions, stay vigilant, and remember that the true diagnosis is out there.