“How I Found Dr. Right—and Got the RA Treatment I Needed!”
It’s important that your doctor is someone you can work well with. One woman shares what you need to know when choosing a rheumatologist.
Kelly Young experienced her first rheumatoid arthritis (RA) symptom—stiff hands—when she was just 13. At the time, she had no idea that RA was to blame. It disappeared (though her finger joints would often get “stuck,” and only later did she connect it with RA).
Over the years, other symptoms came and went, as the disease attacked every major joint in her body. Once, Kelly awoke with excruciating shoulder pain that lasted for weeks before it finally disappeared. She also sprouted terrible rashes, and endured bouts of debilitating stiffness in her wrists. She never knew where pain would surface next.
Eventually, Kelly’s podiatrist—whom she’d been seeing because of foot pain and swelling—suggested she see a rheumatologist. At age 40, the mother of five finally got her diagnosis—but not much else. That first rheumatologist, she says, wasn’t up to date. She actually had to ask around for recommendations and then switch health insurance companies to be able to visit a doctor that sounded right for her.
During her first visit, Kelly was delighted to learn the doctor had recently attended the American College of Rheumatology (ACR) conference and knew about the latest treatments, including biologics, drugs based on compounds made by living cells. “She explained how the biologics worked,” says Kelly. “And told me I should give them a try.”
Kelly’s new medication regimen helped her regain some of her mobility, and in 2009, at age 45, Kelly founded her own website, RAWarrior.com, to help educate and empower people with RA. “It’s so important to be involved in your care,” says Kelly.
Here are 4 key things Kelly learned on her RA journey that may help you:
Find out what your doctor is writing about you
Ask for a copy of your doctor’s notes, and get copies of your lab reports. “Often, what’s written in the chart doesn’t match what the patient is actually saying to the doctor,” says Kelly. When she read her first rheumatologist’s notes, she found no mention of her loss of functionality. Another set of notes incorrectly stated that she’d denied having morning stiffness, although she did. And still another misstated key medical test results. “See if you agree with how the doctor is interpreting what you say,” she urges. Of course, making copies of charts can be time-consuming, so your healthcare provider’s staff may charge you for this service. Minimize time and costs by asking for a copy of the notes every six months (versus asking for your entire chart to be copied every few years).