For 20 years, Frances Muller’s rheumatoid arthritis (RA) was misdiagnosed. A neurologist told her the pain in her hands was carpal tunnel syndrome. An internist told her the all-over aches were the flu. An orthopaedic surgeon said she had bursitis in both shoulders. “None of my symptoms made any sense,” and none of the treatments helped, says Muller, who lives in Scottsdale, Ariz. After she’d seen 13 other doctors, an orthopaedic surgeon who ordered an X-ray of her pelvis finally figured it out: there was no way she could have so much damage to her hips and not have RA.
Misdiagnosis is one of the most common medical errors, occurring in about 10 to 20 percent of cases, according to the National Center for Policy Analysis. It can lead to unnecessary or delayed treatments and physical and emotional suffering.
In rheumatology, where symptoms and diseases frequently overlap, even experienced and well-intentioned physicians can miss important clues. “For many rheumatic diseases, there’s no gold standard [for diagnosis],” says Don L. Goldenberg, MD, chief of rheumatology at Newton-Wellesley Hospital in Massachusetts. “You don’t biopsy it. There aren’t a lot of laboratory tests.” If patients are concerned, they should get a second opinion, he adds.
Here are some rheumatic diseases that are well known for being tricky to detect:
- Sjögren’s syndrome is an autoimmune disease that attacks the body’s moisture-producing glands. It causes dry eyes and dry mouth, and can also damage organs such as the liver, lungs, kidneys and stomach. According to the Sjögren’s Syndrome Foundation, it takes patients an average of up to seven years to receive a diagnosis. Sjögren’s syndrome often is mistaken for conditions like fibromyalgia, chronic fatigue syndrome and allergic conjunctivitis (eye allergies).
- Lupus is a disease in which the body attacks its own joints, skin, tendons and vital organs. Symptoms flare and then disappear. Doctors have dubbed lupus “The Great Imitator” because of its ability to look like so many other diseases, including rheumatoid arthritis (RA), scleroderma, rosacea, multiple sclerosis, Lyme disease, depression and fibromyalgia.
- Fibromyalgia features a mix of symptoms that may include widespread pain, muscle spasms, mood disturbance, fatigue, insomnia, memory problems and irritable bowel syndrome. Fibromyalgia often is mistaken for RA, osteoarthritis (OA), Lyme disease, chronic fatigue syndrome, underactive thyroid, depression, and lupus.
Misdiagnosis Red Flags
To help you decide when it’s time to push for more answers or seek a second opinion, here are seven red flags that your doctor may have arrived at the wrong conclusion about your condition:
1) Your diagnosis is based exclusively on the results of a blood test.
In rheumatology, blood tests are done to check for antibodies—proteins the immune system makes when it is mounting an attack. But blood test results shouldn’t be the sole basis for a diagnosis, because they can be negative in people who do have arthritis, and positive when no disease is present. For example, antinuclear antibodies, which indicate the body is launching an immune attack on itself, can show up for a number of reasons. “I’d say that I see patients on a weekly basis who come to me and say, ‘I have lupus,’ because they tested positive for ANA,” says Robert Shaw, MD, a rheumatologist at the Carroll County Arthritis and Osteoporosis Center in Westminster, Md. Antinuclear antibodies (ANAs) may also be a sign of chronic infections, like sinusitis. Between 3 percent and 15 percent of healthy people also carry ANAs.
2) Your doctor has prescribed a treatment, but it isn’t working.
Trial and error is often a necessary part of unmasking an illness, but always let your doctor know if a drug or therapy is not helping. “A very important diagnostic test is whether somebody responds to treatment the way you think they should,” says Gordon D. Schiff, MD, who researches patient safety at Brigham and Women’s Hospital in Boston.
If a treatment is not working, that doesn’t mean the diagnosis is wrong. Some arthritis drugs work better in certain people than in others. Disease-modifying antirheumatic drugs can take weeks or even months to start working. Before you start on any new treatment, ask what to expect and establish a time frame for seeing results. If you aren’t getting better as quickly as you should, go back to your doctor for a medication adjustment. Or, if you feel the diagnosis just isn’t a good fit, get a second opinion.
3) You were diagnosed by a physician working outside his or her specialty.
Many people start the diagnosis process by visiting a family practice physician. But if you have a complicated case, it may be not be easy for such a generalist to reach the right diagnosis. Even if a primary care physician has correctly diagnosed your condition, you may benefit from having a rheumatologist on your team. Rheumatologists specialize in diseases that affect the muscles and joints, and they can make sure you’re treated appropriately.
4) Your doctor never ordered a key lab test.
While a diagnosis should never be based exclusively on test results, some conditions can’t be positively identified without specific tests. “If your doctor told you that you had gout, for example, but he failed to draw fluid from the joint to check for uric acid crystals, then you might not have gout,” Dr. Schiff says. Other diseases mimic gout, including bursitis, OA, and pseudogout, and they require different treatments. Find out what tests are typically ordered for your condition by checking reputable sources, including the Centers for Disease Control and Prevention; the National Institute of Arthritis, Musculoskeletal and Skin Diseases; the Arthritis Foundation; and the American College of Rheumatology.
5) Your symptoms don’t match your diagnosis.
Many doctors are so busy that they listen to one or two of a patient’s complaints before starting down a diagnostic path, and the resulting conclusion may not quite fit. A patient who comes in with all-over aches in January is more likely to have the flu than lupus, but that won’t always be the case. As soon as your doctor gives you a diagnosis, hit the library and the Internet. Check reliable references to find out what symptoms are typical for the condition you’ve been told you have.
6) You didn’t get a physical exam.
Fewer doctors are performing regular physical exams on their patients, which can lead to mistakes. When a rheumatologist touches your knuckles, for example, joints that are red, swollen, hot and soft may point to an inflammatory form of arthritis, like RA. Joints that are cool and hard may be a sign of OA. If you didn’t get an exam, ask for one.
7) Your doctor didn’t ask enough questions about you.
Medical history questions are important because they can open up diagnostic possibilities the doctor may not have considered. A thorough family history, for example, can reveal genetic predispositions to disease. Other questions, like where you’ve lived or the kind of work you do, may be critically important to your diagnosis. People with particular jobs face a higher-than-average risk of repetitive strain syndromes, such as carpal tunnel or low back pain.
Putting the Puzzle Together
For many people, the problem of misdiagnosis is resolved relatively quickly, with no lasting impact. But Muller says years passed and her pain never went away, despite multiple explanations from doctors. Now when she hears about other patients who are suffering without answers, she has this advice: “Try to find a doctor that just sits and listens to you,” she says. “When a doctor stops listening to you, you need to go to another doctor.”
An arthritis diagnosis can change your life in many ways, but don’t accept that news too quickly. It is surprisingly common for arthritis to be misdiagnosed, and even if you do have arthritis the doctor may specify the wrong type. Any time a doctor orders a lab test, X-ray, magnetic resonance imaging (MRI) scan or ultrasound, find out what the test determined. If the results raise concerns, make sure you are scheduled to see the doctor again for a follow-up appointment.
- Lab Test Guide
- Finding the Right Doctor
- Tips to Communicate with Your Doctor
- Medical Imaging for Arthritis Diagnosis
- Diagnosing Arthritis