Possible Ankylosing Spondylitis Diagnosis Without HLA B-27 Gene

Hi, folks. So, two people on my dad’s side have ankylosing spondylitis. I really strongly think I might, too, but I don’t have the HLA B-27 gene associated with it so my rheumatologist didn’t think it was particularly likely. The only symptom that doesn’t match up 100% is pain being worse at the beginning of the day - sometimes it’s hard to tell when it’s worse because it’s so bad all day. Otherwise, I have the other frequently listed symptoms. Right now, I have been tentatively diagnosed with fibromyalgia, diabetes, de quervain’s tenosynovitis, and sciatica. It does feels like A. S. might be what a going on…. Is there anyone who was diagnosed with AS who doesn’t have the HLA B-27 gene? Any general thoughts and advice are welcome.

Your answer

cosycat92

10mo ago

I also dont have the gene but was diagnosed with AS. Keep pushing for answers.

Audrey_Morelock

1y ago

I don’t have the gene. I didn’t even learn about the gene until about 2-3 years after my diagnosis. My doctors used blood tests (to see the level of inflammation), X-rays (to see if my spine has any damage…which it certainly does), and MRIs (which showed wedging and bulging of my discs along with some other not her fun things). I also had two doctors look me in my eyes and tell me that there is no chance that I have any form of arthritis… it’s been rough out here

Berrygray

1y ago

I dont have the gene but i did get the AS diagnosis i get alot of muscle/joint pain but its all day for me too. I would definitely recommend getting a second opinion, xrays of my lower back were what solidified my diagnosis for my doctor. I would ask/push for xrays if you can

Oouchthathurts

1y ago

The HLA B27 is not the only test in the diagnostic process. This gene doesn’t confirm or deny that you have AS it just helps them put the puzzle together on what you do have. I highly suggest you start seeing other doctors in Rheumatology your allowed to and see as many as it takes to get the right diagnosis. You know yourself best so become your best advocate. I will tell you this at my last visit I asked the Rheumatologist is AS genetic ? She said yes! So you do your own math. I also have fibromyalgia. And my daughter at 22 was just diagnosed with both too. (Genetics) There can also be a diagnosis of Axial spondyloarthritis it’s an umbrella term and it includes: Ankylosing Spondylitis (AS) Where changes to the sacroiliac joints or the spine can be seen on x-ray. I hope this helps a bit message me if you have any other questions.

catdad22

1y ago

Thanks for the encouragement. Dealing with this has definitely forced me to be my (only) advocate in this setting ❤️ We all deserve not to have to take on that on that role 24/7 for medical stuff, but here we are.

Gonk

1y ago

I have AS and don’t have the gene I think about 10% with it don’t have the gene

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