The Diagnosis Journey: In Our Community’s Words
The journey to finding a diagnosis of axial spondyloarthritis is not easy. Many people search for a decade to find the proper diagnosis or a doctor who understands their pain. We asked our Facebook community to share their experiences, and here's what they said.
How many doctors did you see before getting diagnosed with axial spondyloarthritis?
"Actually, my chiropractor caught it. My primary doctor and my kidney doctor don't believe I even have it in my back, in spite of my showing them pictures of my X-rays."
"I lost count. I've been struggling since the age of 27 only to be diagnosed at 37. That's two states and umpteen doctors. Six rheumatologists for sure. Two pain management specialists. At least four PCP's. I even had an oncologist in there at one point."
"Seven, and the delay allowed the damage to progress."
"At least 10 over 20 years."
"Lost count of how many I have seen through the years."
What kind of doctor or specialist diagnosed you with AxSpA?
"Chiropractor. X-rays show it clearly in my back."
"I have YET to find a good rheumatologist who will actually LISTEN!! I have a lot of things wrong with my body, and it stinks that no doctor will believe me."
"My primary - who caught the fact the radiologist listed it on an x-ray taken 5 years earlier (for my previous primary)."
"Rheumatologist, but it took my complementary medicine acupuncture MD to get me a referral (I spent months trying to do pain management while my GP told me nothing was wrong with me)."
"Rheumatologist. [My] former primary internist totally missed it."
How many years did it take you to get diagnosed with AxSpA?
"I was diagnosed at 52 had symptoms since I was in my late 30s."
"I’m 52 working on finding a doctor that would test me, and diagnose me... is not in my head!"
"I am 60 and had symptoms from my 20s, it really sucks."
The journey can be long and difficult
As you can see from what our community has shared, the diagnosis journey isn't easy. There might be many doctors involved, and oftentimes they don't take your pain seriously. But there is hope: doctors are becoming more familiar with AxSpA, and there is a lot of research being done to find effective treatments.
Thank you to all those that have shared their experiences with us. Share what your journey has been like in the comments.
Does reading AxSpA patient stories help you in your journey?