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Seeking Answers: Many Doctor Visits Are Required Before a Spondylitis Diagnosis

Posted on October 12, 2020
Article written by
Heather Lapidus Glassner

As many people with chronic health conditions will tell you, it can be challenging to find out what condition or disease is behind their symptoms. This is particularly the case for people with spondylitis. Doctors may miss spondylitis because back pain is such a prevalent symptom. Tests can miss spondylitis — people may experience symptoms of early stages of axial spondyloarthritis for years before imaging scans show damage.1 According to the Spondylitis Association of America, 1 in 4 people with spondylitis saw five or more health care providers before they received a diagnosis.2

Across MySpondylitisTeam, members discuss visiting many different health care providers to find answers. MySpondylitisTeam recently 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.

Looking for Answers

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.

Looking for Pain Relief

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.

Finding Help

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.3 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 her neurologist refusing to perform blood tests for spondylitis, another encouraged her 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 her relief and gratitude at finding a doctor to take her 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:

What type of doctor diagnosed your spondylitis? What types of specialists did you see before receiving a diagnosis? Comment below or post on MySpondylitisTeam.

References

  1. 6 Diseases That Could Mimic Ankylosing Spondylitis — and Delay Your Diagnosis — CreakyJoints.org
  2. Key Messages When Meeting With Representatives — Spondylitis Association of America
  3. What is a Rheumatologist? — American College of Rheumatology
Heather Lapidus Glassner has over two decades of experience in market research. She has conducted social listening and quantitative survey research across a variety of conditions. Learn more about her here.

A MySpondylitisTeam Member said:

I am so sorry to hear this..
Like me, you may also feel that friends and family just don't know how we truly feel each day.
What to do

posted about 1 month ago

hug (4)

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