As many people with chronic health conditions will tell you, finding out what condition or disease is behind their symptoms can be challenging. This is particularly the case for people with spondylitis. Doctors may miss spondylitis because back pain is such a prevalent symptom in other health conditions. Tests can miss spondylitis — people may experience symptoms of early stages of axial spondyloarthritis for years before imaging scans show damage. It’s not uncommon for a person with the condition to see multiple health care professionals before getting a definitive diagnosis.
Across MySpondylitisTeam, members discuss visiting many different health care providers to find answers. in 2019, MySpondylitisTeam conducted a survey that examined the path to a spondylitis diagnosis. We asked questions about which types of health care providers members consulted as they sought answers, as well as how many different doctors they were referred to before receiving a final diagnosis.
According to the results of the survey, three-quarters of respondents had to consult more than one doctor prior to receiving a diagnosis. Of that group, 64 percent saw four or more doctors before they were diagnosed with spondylitis.
Respondents also consulted many different types of doctors for their symptoms. In fact, among 263 members who responded to the survey, the average was more than four types of doctors seen. The most common starting point was the general practitioner (71 percent), followed by a rheumatologist (57 percent). Others were diagnosed by chiropractors, orthopedists, physical therapists, or neurologists.
The search for symptom relief also included trying to find treatment options for inflammatory back pain. Forty-nine percent had an appointment with a pain management doctor, and 27 percent had visited an emergency room for help in controlling their symptoms.
Ultimately, 43 percent of respondents said a rheumatologist diagnosed their spondylitis. That means almost 6 in 10 were diagnosed by someone other than a rheumatologist.
Rheumatologists have the most specialized training to diagnose and treat spondylitis. This suggests that many more people could benefit from seeing the correct type of specialist to confirm their treatment plan is appropriate for their disease. A rheumatologist with experience diagnosing spondylitis will be more likely to ask the right questions about medical history and family history, look for inflammation and joint pain during a physical exam, and order scans of sacroiliac joints and blood tests such as C-reactive protein to assess levels of inflammation in the body.
Members of MySpondylitisTeam often encourage each other as they search for health care providers who will listen and help them find a diagnosis. When one member expressed frustration with their neurologist refusing to perform blood tests for spondylitis, another encouraged them to keep looking: “Find another neurologist and a really good rheumatologist. Keep looking till you find the right fit. Sort of like buying shoes or jeans. Just keep trying till you find the perfect fit.”
Another MySpondylitisTeam member shared their relief and gratitude at finding a doctor to take them seriously: “I want to say that my rheumatologist was a godsend. She was the first doctor who didn’t look at me like I was faking my symptoms since I was young.”
Read more about results from the MySpondylitisTeam diagnosis survey:
On MySpondylitisTeam, the social network for people with spondylitis and their loved ones, more than 89,000 members come together to ask questions, give advice, and share their stories with those who understand life with spondylitis.
What type of doctor diagnosed your spondylitis? What types of specialists did you see before receiving a diagnosis? Comment below or post on MySpondylitisTeam.