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The Long Journey to a Correct Spondylitis Diagnosis

Posted on October 13, 2020
Article written by
Heather Lapidus Glassner

According to a Clinical Rheumatology article on delays in the diagnosis of spondylitis, it can take as long as 13 years for people with spondylitis to be correctly diagnosed.1 Sometimes tests — such as X-rays — do not show the extent of the disease, and results are considered inconclusive.2 Spondylitis can be misdiagnosed because it can mimic other diseases.3 If the doctor you go to for a diagnosis is not a specialist, such as a rheumatologist with experience diagnosing spondylitis, it can delay the correct diagnosis even longer.

A recent MySpondylitisTeam survey confirmed the challenges people 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:

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

References

  1. Ankylosing spondylitis diagnosis in US patients with back pain: identifying providers involved and factors associated with rheumatology referral delay — Clinical Rheumatology
  2. Ankylosing Spondylitis Diagnosis — Stanford Health Care
  3. 6 Diseases That Could Mimic Ankylosing Spondylitis — and Delay Your Diagnosis — CreakyJoints.org
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:

By the way, mentally you go through a grieving process when you are first diagnosed. At least I did. If you have ever had the opportunity to read a book… read more

posted 29 days ago

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