Are you HLA-B27 positive or negative?
I think its important to highlight that not everyone with AS is HLA-B27 positive. Let me know if you are positive or negative!
Yes
I'm negative and remain undiagnosed, despite a "chronic sacroiliitis" diagnosis at 27 and 20+ years of chronic inflammatory back pain that meets the ASAS diagnostic criteria for Ax-SpA and certainly for Nr-AxSpa. The first rheumatologist told me maybe I had dystonia (nope - symptoms aren't even close to matching), the second said it couldn't be AS because I was seronegative and not a man (eye roll to medical misogyny), and the third diagnosed degenerative disc disease without reviewing any of my recent MRIs which show no disc degeneration whatsoever. In fact, another physician who reviewed my imaging said my discs look like someone in their 20s, not their 50s. Depending on how well your rheumatologist understands the spectrum of spondyloarthropothies, being seronegative can sometimes be a real road block. It certainly has been for me!
You aren't alone in having a long complicated road to diagnosis and treatment. Here's an article written by one of our health leader who struggled for 7 years to get a proper diagnosis. Like you, she was HLA-B27 negative, and not a man. Thanks for sharing your story! Warmly, Kathy (Team member)
my son has the signs he has ankylosing spondylitis that's why his doctor did no longer subjected him to HLA-B27 test, also because its too expensive here in the philippines
Totally get that, especially with the cost. Sounds like his doctor made a smart call based on what they’re seeing. Has he started a treatment plan yet, or is the doctor still figuring out the best approach for him? -Latoya (Team Member) Has your son's doctor done other examinations to decide that his condition is probably AS? Here's an article overviewing some of the ways other than the HLA-B27 test that can be used. Warmly, Kathy (Team member)
I have a positive HLA-B27. It was actually what raised flags and led to my rheumatology referral. 3 years later I was diagnosed with AS
Three years is a long time to wait for answers. Glad the test helped start the process, even if it took a while to get the full picture. -Latoya (Team Member) How are you doing now? Has your doctor developed a treatment plan for you? Warmly, Kathy (Team leader)
