How to identify Ankylosing Spondylitis? - Dr. Kodlady Surendra Shetty
Michael's Ankylosing Spondylitis Story: A Diagnosis Delayed
Because ankylosing spondylitis strikes people at a young age, getting the right diagnosis can be much more difficult than diagnosing other types of arthritis, as Michael Smith found out firsthand.
By Chris Iliades, MD
Medically Reviewed by Pat F. Bass III, MD, MPH
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Michael Smith was 29 years old when he first went to a specialist to find out what was wrong, but it wasn’t until five years later that he finally got an accurate diagnosis for his pain: ankylosing spondylitis. Ankylosing spondylitis, a lifelong inflammatory disease, is a form of arthritis that doctors may overlook.
"In 1980, I spent 0, which was a lot of money for me, to have a back specialist tell me my back pain was all in my head. After that, I decided I was done with doctors," says Smith, who worked as an office manager in New York City. “Five years later, my mother had to drag me to a rheumatologist who finally diagnosed me with ankylosing spondylitis.”
Unfortunately, Smith’s long and painful journey is not unique. Ankylosing spondylitis affects about 300,000 Americans, according to statistics from the University of Washington Orthopaedics and Sports Medicine center. A spondylitis diagnosis may be missed or delayed, and the real number of people with the disease could be underestimated.
Relief Yet Frustration
Smith started feeling symptoms well before he saw a back specialist, and his earlier doctor visits left him with more questions than answers. "I was a healthy young guy when I started getting back pain and stiffness, especially in the morning. I also had pain and stiffness in my legs and my neck. I had a job that required lots of driving, so I blamed it on that. Doctors did not seem to be too concerned about it," recalls Smith.
"I remember seeing some kind of doctor that had me wear a custom-made, corset-type back brace under my clothes. I think I wore it during the day for almost a year,” he recalls. “Imagine my frustration in being told later that wearing the brace actually allowed my spine to fuse faster," a common symptom of the condition.
"When I finally saw a rheumatologist who was familiar with spondylitis symptoms, he asked me about 10 questions and told me I was a textbook case. I was relieved to know what was wrong with me, but I was also upset that I had wasted so many years not knowing," Smith says.
At that point, X-rays already showed changes in Smith’s spine, and he tested positive for a gene that produces a protein called HLA-B27, which is passed down through families and has been linked to ankylosing spondylitis. "I have searched my whole family tree, and I can't find anyone else with chronic back problems, so I don't know where that gene came from," Smith says.
Although about 80 percent of people with ankylosing spondylitis have this gene, most people with it don’t get spondylitis symptoms, according to statistics from the University of Washington Orthopaedics and Sports Medicine center. Doctors are still trying to find out why. One theory scientists have is that a bacterial infection triggers the gene to become active.
Smith has had to conquer many challenges stemming from his ankylosing spondylitis. "By 1989, I already had fusion in my neck and spine. Over the years, I have had to have a knee and a hip replacement,” he says. “But I am still working, and I have learned to live within my limits. Since 2000, I have been on a medication called Remicade, which is the only thing that really helps."
Having an unpredictable and chronic disease like ankylosing spondylitis is stressful — and that means having good support system is integral. Smith has been a member of the for many years and highly recommends them as a support resource for anyone with a spondylitis diagnosis.
Video: Diagnosis and Management of Complex Ankylosing Spondylitis
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