Reply to I suspect that I have ankylosing spondylitis. My GP is dismissing me.

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[quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous]OP here.  My bloodwork for HLA-B27 is negative.  After doing a deep dive into symptoms, I’m still convinced I have this or something similar.  I can’t get into the rheumatologist for the first appt until the end of June.  I’ve been suffering for a very long time and assuming it was something completely different.  My PCP is going to run an inflammation panel after I have pushed and pushed.  (CRP, ESR, ANA) If that comes back negative, does it rule anything out?[/quote]

An insistence that HLA-B27 must be positive causes many women especially to not be diagnosed properly with spondyloarthritis.

I have a child with a form of spondyloarthritis that is discussed in obscure medical journals but which is not yet officially recognized. The striking thing about this form is that it almost always HLA B27 negative. In the meantime, her official diagnosis is axial spondyloarthritis.

ANA is typically negative for those with spondyloarthritis, but CRP or ESR or both typically is elevated. However, in some cases neither is.

What is very helpful is an extended hands-on exam by a skilled practitioner. I still can't believe that of the many doctors I took my child to figure out what was going on, only the last one, who made the diagnosis, asked her to touch her toes. The tips of her fingers hit mid-thigh.[/quote]

Very interesting.  What type of spondyloarthritis? Who does she see?[/quote]

She has spondyloarthritis associated with FMF, a genetic auto-inflammatory disease. Most research comes from Turkey, the only country with advanced research facilities that has a sizeable enough population of people with the disease for large studies.

She was seeing Dr. Laukaitis, already much mentioned here. We are in the process of finding another rheumatologist since he retired. I referred two (male) work colleagues to him whose doctors had bungled their spondyloarthritis diagnoses because they were HLA B-27 negative. One eventually had to leave on disability because he had gone untreated for too long.[/quote]

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