I was diagnosed by 1 doctor of having spondylitis but that doctor left and now I can not get a doctor to believe I have it!! So I need to make sure my symptoms are related to spondylitis so I don’t think I’m crazy
The test is actually called an HLA/B27 and it will let you know if you carry the antigen for AS. My insurance made get a confirmatory MRI that showed degeneration in my SI joints before they would start treatment. I suggest Spondylitis.org for lots of resources
As an RN I can tell you that although many tests can be done, diagnosis is usually done by X-ray or MRI. The SI joints are the first place they look. You do not have to test positive for HLAB27 which is a genetic marker, the most common but really one of about 40 now that they have found. If you show no evidence of fusion or inflammation of the SI joints you could have an earlier stage called non-radiographic Axial Spondylosrthritis. It can be just as painful or more so than another person with fusion.
But diagnosing yourself is a dangerous thing. It can lead drs down the wrong path as well. Many of these symptoms found with this disease are also the same in other illnesses. I was misdiagnosed first with MS and went through more than a year of treatment before my rheum. Finally diagnosed me.
They will think you are crazy anyway. I decided not to take opiates due to the lack of respect from providers to my pain. The mistreatment got me very angry and them thinking I could not justify my pain. I mean after 7 operations on my spine and a shoulder replacement due to necrosis and Rheumatoid Arthritis was not enough to justify my medications. No compassion whatsoever. So I stopped cold turkey! It was horrible
Hi @A MySpondylitisTeam Member, I almost thought that I was reading my own post. The same thing happened to me. Finally I had found another rheumatologist (the one I'm using now). He tried to say that for the 3rd time that I also didn't have AS. Then the next appointment I had with his PA. I asked her if they have read my 1st Dr's notes? Well then my next appointment I was told that they read them and agreed with my 1st Dr. that I have AS. That's how I did it. I would suggest for you to go back and get a copy of your 1st Dr. (If you can) and get a new rheumatologist and take the notes with you for them to read. Hugs
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