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!
I'm HLA-B27 negative.
Hi I am one of those people who don't have the HLA-B27 gene. And it has even made me wonder, over the years, if I did actually have AS. So much so that I've even stopped my meds to see if the AS is still there. Of course, every time I stopped the symptoms would get worse and so back I would go onto the meds. It's been with me for over 20 years now and, like anything else, you adapt. Or, atleast, you try too.
Interesting article. And interesting that it varies from country to country.
Take care.
Steve - Community Advocate, the same with me, several times I've had this doubt that I really had AS, and whenever I perform an MRI exam, the progression and damage that are typical of AS appears and then I get convinced. In fact, not having the HLA-B27 gene makes it difficult not only for doctors to make a diagnosis, but for us patients to convince themselves that the diagnosis was correct.
I am HLA-B27 positive. Or as my wife says,
"rick you are lucky I let you live here in my presence". Oh, maybe we were talking about something else.
Never mind.
I came up100% positive for the HLA-B27 and found out a little over a yr ago. It took my own research and changing doctors, health plans, etc...and 3 yrs to get the diagnosis. I didn't want it, but I knew I didn't have everything else all others were trying to tell me I had. Hahaha...I should give my hubby a medal of valor for his continuing emotional support! Or maybe that's just my sleeplessness talking,, lol
I am HLA B27 +
I am HLA-B27 positive. I have had a diagnosis of AS for nearly 40 years. During this time I went to several different rheumatologist due to moving or Dr leaving, etc. Several times with a new Dr, when I said I had AS they would all but say I was lying. Three, yes “3” times I’ve had my HLA-B27 tested. Then these Drs would look at my X-rays and say, “You have AS”! You just have to keep a sense of humor!
that's interesting. I wonder if it skips generations and she might be a carrier? I will look into this more. Thank you for this information. My daughter was tested recently and was told she carries the genetic code for it but is thankfully negative. But that it can be passed to another generation, which would mean my grand children and my thoughts are.."Oh please God no, not them." And you're welcome. Every little bit of info helps.
I am HLA-27 positive. With that being said, my two closest friends who also have AS are both HLA-B27 negative. It breaks my heart because I was diagnosed within 5 months of my symptom onset because I was positive. They were not so lucky and had to fight for their diagnosis' just because they were negative. Definitely needs to be more awareness surrounding this topic! -Katie, Team Member
Well u seem to be going thru some rough stuff too. Sorry to hear that! As for your cardiologist and pulmonary, you might want to askif it IS associated w/ AS. Mine is but maybe not the same for you. If not, maybe they can find out why things have changed in those areas.
And yes, sometimes I laugh so hard at doctors appts because it's the only thing that keeps my sanity. Keep smiling, keep laughing. I pray you get thru these new issues.
Hi
I am negative too. My wife and I agree, looking back, I probably had it at least 10 years before it was diagnosed. It certainly would explain a lot. Here in the UK (sorry, I'm not sure if you are here or in the US), there has recently been a drive to reduce the diagnosis time. Apparently, people like me, who went a long time before getting diagnosed, have not such a rosy longterm outcome. Having said that, I am doing okay, I think, given that I am in my 22nd year of being diagnosed.
On we go. :0)
Steve- Community Advocate
