Self-Diagnosis and Self-Treatment Can Delay a Correct RA Diagnosis
Most people, after developing early symptoms of some sort of illness or disease, try self-treatment before consulting a doctor. Self-treatment usually involves over-the-counter medications, such as Advil (ibuprofen), as well as other treatment options readily available at your local drugstore. It is worth a try if your symptoms are not initially severe, but don’t prolong self-treatment once it becomes apparent that your symptoms are not improving.
The Importance of Getting an Accurate Diagnosis Early
Proper treatment requires an accurate diagnosis. Doctors are trained diagnosticians. It is appropriate to consult your doctor for an accurate diagnosis and to initiate a treatment plan. While you should likely start with your primary care physician, certain conditions may necessitate that you consult a specialist. With a specialist involved, your chance for misdiagnosis should be less, but not always. An early, accurate diagnosis is essential, largely because with RA there is an ideal window of opportunity to start treatment which can slow disease progression and prevent joint damage. Essentially, the earlier the better is the goal for initiating treatment.
4 People With RA (Who Were Initially Told It Was Something Else)
“The doctor didn’t suspect RA until I asked about lupus, because my grandmother had lupus. “In 1989, I had severe pain in my arms and hands that would wake me up in middle of night, and nothing relieved it,” explains Nicki Hickman of Columbia, Tennessee. “I went to the emergency room and they said possibly it was carpal tunnel [syndrome]. When I went back about three weeks later with severe pain, I couldn’t even turn the key to unlock a car door. They put a forearm splint on, again, and told me to follow up with an orthopedic doctor, who took X-rays but said it was possible carpal tunnel.” Hickman’s nerve conduction study showed negative results, and while an MRI revealed cervical bone spur and bulge, there was still no diagnosis. She was put in a cervical collar, but the severe pain continued. “When I went back to the orthopedic doctor he said he didn’t know what was causing my health issue,” she recalls. “I asked, ‘Could it be lupus? My grandmother had lupus.’ “His mouth dropped to the floor. That is when he decided to do the RA blood panel. I was positive for RA. Had I not thought to ask the question, he would never have suspected RA.” “My seronegative test result threw my doctors off.” Karen Heber, of Maricopa, Arizona, who was ultimately diagnosed with rheumatoid arthritis in 2008, at age 62, first sought help in the 1990s. “I started seeing doctors about my hands. Some tests were run and I was told there didn’t seem to be anything wrong with me. I kept looking for help and consulted rheumatologists when I could,” she says. “In 2007, I was having a terrible time with pain and aches and fatigue and I started looking again in earnest. One doctor suggested it might be RA, but prior to 2008, tests showed no RA,” she says. Finally, in the summer of 2008, she was diagnosed with seronegative RA. Heber notes, “I am sure that if I had not been seronegative, I would have been diagnosed earlier, with treatment starting at a better age for me.” “I regret not speaking up sooner.” Ann, of central Massachusetts, who asked that we not use her surname, has lived with joint pain for 15 years, says she was misdiagnosed initially. “My first diagnosis was metatarsalgia [pain and inflammation in the ball of the foot] by my general practitioner,” she says. “But it was not until a year later, when swelling in my hands showed up, that a young intern mentioned RA. He sent me right off to a rheumatologist. In hindsight, I suppose I could have pressed further in that year. I don’t think any tests were done.”
Getting a Diagnosis Before Getting Tested
I myself was initially misdiagnosed. I was a teenager when my first symptom of RA developed. Following a tennis match, my knee became very swollen and painful. My family doctor in Cleveland, Ohio, drained the knee and gave me a cortisone shot. But it recurred four times over eight weeks. My doctor repeated his treatment routine, diagnosed it as a “sports injury” and told me to take aspirin. He never sent the knee joint fluid to be examined. He discarded it. Over time — and not too long a time — my symptoms spread to my hip. My family doctor referred me to an orthopedic doctor who also thought it was a sports injury. I requested a referral to a rheumatologist about one or two years after my initial symptoms, and after further testing, I was diagnosed with RA at age 19.
Why Diagnosing RA Is Difficult for Rheumatologists
There are many other stories of RA misdiagnoses, including delays in reaching the correct diagnosis for patient Jeff Krakow and the Canadian snowboarder Spencer O’Brien. Why is it so hard for doctors to get it right? Scott J. Zashin, MD, a rheumatologist based in Dallas, explains how RA can seem difficult to diagnose. “When patients present with signs and symptoms of an inflammatory arthritis (such as morning stiffness in the hands and feet, and swollen joints) and have a positive rheumatoid factor (RF) or anti-CCP antibody, the diagnosis is very clear. The more difficult diagnosis occurs when the patient may not have clear-cut swelling or RA markers are negative,” he says. A new diagnostic antibody test, the 14-3-3 ETA, reported on in June 2017 in the Annals of the Rheumatic Diseases, may help in some cases, but it is still being researched and is not commercially available everywhere. “Because it is a more expensive test,” says Zashin, “I reserve it for patients in whom the diagnosis is not confirmed.” And, he adds, “In some patients, the joint symptoms are felt to be due to a viral cause. But when the symptoms persist after three or four months, a more chronic type of arthritis like RA must be considered.”
