Getting a correct spondylitis diagnosis can take as long as 13 years, according to a Clinical Rheumatology study. Sometimes tests — such as X-rays — don’t show the extent of the disease, and results are considered inconclusive. Spondylitis can be misdiagnosed because it can mimic other diseases. Seeing a doctor who isn’t a specialist, such as a rheumatologist, can delay diagnosis even further.

A 2019 MySpondylitisTeam survey confirmed the challenges people living with spondylitis face in receiving a correct diagnosis. In the survey, MySpondylitisTeam asked members about the process of being diagnosed, including how long it took, how many health care providers they saw along the way, and what type of doctor ultimately diagnosed them with spondylitis.

Delayed Diagnosis

Seven in 10 respondents said it took more than five years to receive a proper diagnosis. In fact, 37 percent said it took more than 11 years from the onset of their symptoms.

Misdiagnosis Is Common

Three-quarters of MySpondylitisTeam members did not receive the correct diagnosis the first time they saw a doctor for symptoms. Among these respondents, 3 in 4 were told they had “back pain.” More than 4 in 10 were told they had degenerative disc disease, muscle strain, or muscle pain. And just under one-third were told they had osteoarthritis or spinal stenosis.

Difficulties receiving the correct diagnosis are a common topic on MySpondylitisTeam. “I was diagnosed with spondylosis rather than spondylitis,” one member shared. “My [general practitioner] did not send me to see a specialist straight away — it took over a year to get a referral, then spent months trying different pain therapies before I got an MRI scan. It revealed damaged discs and fused vertebrae pressing on my spinal cord.”

Spondylitis diagnosis can also be complicated by the presence of more than one condition.

Read more about results from the MySpondylitisTeam survey on diagnosis:

• Seeking Answers: Many Doctor Visits Are Required Prior to a Diagnosis
• What People With Spondylitis Wish They Had Known Earlier

Talk to Others Who Understand

MySpondylitisTeam is the social network for people with spondylitis and their loved ones. On MySpondylitisTeam, more than 68,000 members come together to ask questions, give advice, and share their stories with others who understand life with spondylitis.

How long did it take for you to receive a diagnosis? Did you experience delays or misdiagnosis? Comment below or post on MySpondylitisTeam.