My doc tried to get me in a drug trial but the mri didn’t show inflammation and hla b27 was negative so I don’t qualify. Now I’m stressed that this info will make him rethink my diagnosis. I was happy(sort of) to finally having an answer to why I’m in so much pain all the time and get on track to feeling better(sort of). His diagnosis was based on deteriorating of the si joints caught on an X-ray.
Yes, it is possible to be HLA B27 negative and still have spondylitis. 85% of people with axial spondylitis are HLA B27 positive, but that still leaves 15% of people who aren't.
And another question or anomaly or craziness is flareups so apparently we can go long stretches of time without a flareup until something stress induced happens and then all kinds of major medical problems happen who can structure their life around life yes that is a conundrum I understand but I’m curious??
I’m HLA B27+ but wasn’t diagnosed till I got uveitis and iritis and was in golfed in the cloud pretty much lost my vision and then I was given the antibody test and that’s when I found out I had ankylosing spondylitis and I was told that I’d probably had it for a long time middle school to high school and now at 44 I feel like I have a lot of life but when I try to work I conditions along with neck bad back and sciatica pain I’m wondering how much more I can go and the I thing That I was put on for my Ankylosing spondylitis was Humira shots and because of the auto immunity and me my body rejected it and say then got psoriatic psoriasis which is also supposed to be something that Humira helps with but since then I have taken Celebrex but I’m gonna tell you that none of it touches the pain. And then I try to go by the old outage a body emotion is a body without pain and tell there’s no more motion and who can just stay in motion all the time anyways this really seems like a serious issue that takes precedence in someone’s life to the point of your mental deterioration does start to be a parent and depression sets and anxiety about bills and how you’re gonna live who’s gonna want a partner in life who can’t function properly and is degenerativily declining rapidly I mean it’s your span I went from just one eye needing something for correction to both eyes being completely different and now I have bifocals and a two year span I’m terrified what is the next five years look like for me?!
I tested Negative and still got dx from rheumatologist. My rheumatologist said I have fibromyalgia with underlying spondylosis or ankylosing spondylitis. A negative blood test does not mean much really. The doctor needs to look at all things together meaning your pain areas your pain levels how long have you been in pain. Etc. Hope you find answers. It took me over three years to get my diagnosis thankfully now I am starting methotrexate. Not much has changed as far as my pain level. I’ve been on methotrexate six weeks And this is my second medication already on top of everything else that I take.
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