When you feel sick, achy, or exhausted, you want to know why. You want to know now. But it’s not always easy to find the right diagnosis, especially when your symptoms are vague or common. And unfortunately, some of the time the experts come up with a misdiagnosis.
While we hear a lot of news about drug errors and nightmarish incidents of surgery performed on the wrong body part, incorrect diagnoses are even more prevalent in the medical world. Missed, incorrect or delayed diagnoses are estimated to affect 10 to 20 percent of medical cases, oftentimes with serious consequences. A 2012 meta-analysis published in the journal BMJ Quality & Safety found that fatal diagnostic errors in U.S. intensive care units are roughly equal to the 40,500 deaths that result each year from breast cancer. And a 2013 study of 190 errors at a VA hospital system in Texas found that many errors involved common diseases such as pneumonia and urinary tract infections; 87 percent had the potential for “considerable to severe harm” including “inevitable death.” By some accounts, there are at least 12 million misdiagnoses a year in the United States.
A 2008 meta-analysis of autopsy and malpractice data published in the Internet Journal of Family Practice looked at the outcomes of malpractice and autopsy findings to compare relative rates of misdiagnoses. The authors discovered that these diseases were the most commonly misdiagnosed:
The data in the 2008 study showed that acute infections were the number one most commonly misdiagnosed condition, but that was based on the sheer number of cases. Since there are millions more infections than the other illnesses considered, that skews the numbers; if relative incidence is calculated, infections do not make the top five. That said, there are a lot of infections that are misdiagnosed, and the outcomes can be serious or even fatal. Among the most commonly misdiagnosed infections are ear infections, urinary tract infections, yeast infections, and staph/MRSA (methicillin-resistant staphylococcus aureus) skin infections. Misdiagnosed infections often lead to unnecessary antibiotic use, which is a primary cause of the growing problem of drug-resistant bacteria.
2. Pulmonary embolism (blood clot in the lungs)
The symptoms of having a blood clot in the lungs — from unexplained shortness of breath and chest pain to anxiety and sweating — are often missed by health care professionals. And sometimes there are no signs or symptoms at all. The high rate of misdiagnosis for pulmonary embolism, the study suggested, could be an important factor in why the condition kills so many people each year. There are more deaths from pulmonary embolism each year (60,000-200,000) than from AIDS, lung cancer and car accidents combined.
3. Myocardial infarctions (heart attack)
Misdiagnosis of heart attack often happens when the patient is unable to accurately report symptoms or if the patient does not have common risk factors. In addition, heart attacks don’t always present as we might expect; the typical clutching, heaving, and collapsing we see on TV doesn’t always happen, particularly for women. In fact, only 30 percent of women report having any chest pain at all during a heart attack, which contributes to the higher risk of misdiagnosis in women. To complicate matters, myocardial infarction symptoms can be easily confused with heartburn, pulmonary embolism, gallstones, bronchitis, gastritis or nervousness.
4. Cardiovascular disease
According to the Centers for Disease Control and Prevention, around 600,000 people die of heart disease in the United States every year; that’s one of every four deaths. A diagnosis of heart disease can be overlooked due to lack of symptoms, or because signs mimic those of other conditions. Symptoms like weakness, cough, fatigue, dizziness, backache, indigestion, sweating, shortness of breath, nausea and vomiting are often attributed to less serious conditions like anxiety, GERD, gallstones, muscle aches or influenza. Like heart attack, heart disease is far more likely to be misdiagnosed in women than men.
5. Neoplasms (cancer)
An estimated 12 percent of all cancers are initially misdiagnosed, according to the meta-analysis. Based on relative incidence, the study concluded that the five most commonly misdiagnosed diseases were breast cancer, melanoma, gynecological cancer, colorectal cancer and hematological cancer. A separate study by researchers at Johns Hopkins University found that up to one out of five cancer cases was misclassified, which could dramatically affect a patient’s treatment and outcomes.
In addition to the five illnesses identified above, research has shown that the following conditions are also commonly missed or given the wrong diagnosis:
Some stroke symptoms are obvious, but others are so hard to catch that even emergency room doctors often get the diagnosis wrong. A 2014 study from Johns Hopkins looked at 200,000 stroke patients and found that nearly 13 percent of them had visited the emergency room up to a month earlier with complaints of headaches and dizziness – indicating a stroke or a precursor – but were diagnosed with benign conditions like inner ear infection or migraine, or received no diagnosis at all. Further, doctors were up to 30 percent more likely to misdiagnose signs of stroke in women and minorities; the odds were even worse for those under the age of 45. Prompt diagnosis and treatment of early stroke symptoms is critical because these temporary, non-disabling conditions are often a harbinger of a catastrophic bleed or clot in the brain that can lead to death or permanent disability just days later without appropriate treatment. The Johns Hopkins researchers estimate that the number of missed strokes resulting in harm to patients could be anywhere between 15,000 and 165,000 annually, with about 20,000 to 30,000 resulting in permanent disability or death.
7. Celiac disease
Although we seem to be a nation of people who love to shun wheat, those who suffer from celiac disease have an autoimmune disorder that makes them physically unable to digest gluten. The vomiting, abdominal pain and bloating, diarrhea, weight loss, anemia and leg cramps that can come with celiac disease are often attributed to other conditions, especially irritable bowel syndrome. While there are blood tests to measure for signature antibodies, some 10 percent of people with the disease nonetheless test negative. Many people with celiac go for more than a decade before a proper diagnosis is made, while others never receive the right diagnosis. According to Celiac Central, 83 percent of Americans with celiac disease are undiagnosed or misdiagnosed with other conditions. This can result in serious health complications — like reduced bone density, intestinal cancer, and increased mortality risk — as well as significantly higher health care costs.
Listed by the AARP as one of the illnesses that doctors often have trouble identifying, the symptoms of this chronic inflammatory disease include fatigue, rash and joint pain, and can vary considerably from one person to the next. Symptoms of lupus are commonly misdiagnosed as chronic fatigue syndrome, fibromyalgia or rheumatoid arthritis. Without proper diagnosis, the inflammation associated with lupus can lead to severe complications including organ damage and death.
9. Sacroiliac joint dysfunction (chronic lower back pain)
Studies show that 20 to 25 percent of chronic lower back pain comes from the sacroiliac joint — the joint that connects the spine and the pelvis — not the spine itself. Yet most spine specialists don’t learn about this area during their residency or fellowships, and as a result, says CNN, “many people progress through the usual stages of back pain treatment, from physical therapy and chiropractic treatment to injections, laser procedures and finally to surgery, without ever addressing the true source of the pain.” One study found that for spinal fusion patients who still had chronic pain after surgery, the sacroiliac joint was to blame in more than half the cases.
10. Parkinson’s disease
There are no lab tests to diagnose this degenerative disorder of the central nervous system, but the tremors, stiff muscles, and balance problems are sometimes attributed to Alzheimer’s, stroke, stress, traumatic head injury or essential tremor. The best way to test for Parkinson’s disease is to conduct a systemic neurological examination that includes tests to gauge a patients reflexes, muscle strength, coordination, balance, gait, and overall movement. Even with proper assessment, an estimated 25 percent of cases are misdiagnosed.
11. Lyme disease
Without evidence of having been bitten by a tick or the telltale bull’s-eye rash, many cases of this systemic infection are not diagnosed quickly. Symptoms that come with Lyme disease – such as shortness of breath, abdominal cramping, nausea, vomiting, and a stiff neck – may be diagnosed as mononucleosis, influenza, chronic fatigue syndrome, fibromyalgia or depression. In 2013, the Centers for Disease Control and Prevention released new estimates of Lyme disease cases indicating that previous figures had underestimated the prevalence by ten-fold — instead of 30,000 cases annually, the CDC now estimates that an average of 300,000 people are infected each year, and even that number doesn’t capture all cases.
A 2009 meta-analysis of more than 50,000 patients found that general practitioners have a tough time distinguishing between those with and those without depression — in fact, the number of misidentifications (false positives of depression) was higher than the number of depression cases they accurately diagnosed during initial consultations. The physicians only correctly identified depression in 47.3 percent of cases. Nationwide estimates indicate that up to half of people with depression are currently undiagnosed and untreated.
While the statistics may seem grim, the point is that as patients we need to be a bit proactive – and doing so can make a difference. Listen to your body and press on if you feel like your physician isn’t getting something. Be clear about your symptoms and make sure your doctor knows your medical history. Ask your doctor for a differential diagnosis (a list of other diagnoses that are possible) and know that it’s fine to second guess. Feel comfortable asking for tests and if you don’t hear back with the results, follow up. And don’t be afraid to ask for a second opinion. As Charles Cutler, MD, an internist and chair of the American College of Physicians’ Board of Governors tells WebMD, “I’m not perfect, and to go to another doctor and get another opinion doesn’t threaten me in any way.” Nature, science, and biology are unpredictable, he says. “Good doctors are not threatened by a second opinion. In fact, they’re strengthened by it.”