Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group AS Rating System - Stage 1 to Stage 4

Although I am frustrated it took so long to finally get a dx, I am so glad in a way that I had never heard about AS until I was dx with it. I think I would have gone stark crazy if I had known about AS and struggled to get a dx or in your and many others cases been dx and then have the dx taken away.

The road to dx for my kids has been much swifter given the rhuemies we deal with taking my dx into account. Only hurdle we have had is with my boy because he is HLA-B27 negative but ANA+ so the doctor knew something auto immune was going on just hadn't pin pointed it until last week.

So agree!

It took a while, but finally I found a rheumy who doesn't think anyone should have to deal with muscle spasms that make you scream. He goes with the symptoms and functionality. That's what matters to him. Thank goodness.

It is true that the physical record belongs to the doctor or hospital, but the information also belongs to you. You are entitled to copies. You may have to pay a small copying fee to get them, but that is your right IF they still exist. Records from 1986 may not still exist if you have not seen the doctor since that time.

Hmmmm, I am not entirely sure what you mean by "tested positive three times with clear inflammation in the SI area." If the Atlanta Rheumatologist ordered an SI x-ray that showed bi-lateral grade 2 sacroiliitis, there would be no reason to repeat the x-ray. Are you referring to blood work or MRIs? There is no blood work that definitively diagnoses AS. Being HLA-b27+ helps, but is not truly diagnostic. Same thing for elevated SED rate or CRP. Guidelines for a positive SI MRI were published fairly recently (last several years). In accordance with the ASAS criteria, a positive MRI showing a particular pattern of bone marrow edema indicative of sacroiliitis would result in a diagnosis of Axial Spondyloarthropathy. Even under the ASAS guidelines a diagnosis of AS/Ankylosing Spondylitis does require meeting the Modified NY Criteria. (Bi-lateral grade 2 sacroiliitis on x-ray) "Inflammation in the SI area" sounds a bit too general to arrive at a definitive diagnosis.

Since you have had so many doctors tell you that you do not have Ankylosing Spondylitis, is it possible that you do not have full blown AS, but do have Undifferentiated Spondylitis (or substitute any of the other terms here - Axial, Psoriatic, etc)? The diagnostic criteria for the other Spondys is less rigid as they do not require grade 2 sacroiliitis. They are not any less painful or debilitating to deal with. Depending on how you are approaching it, you may be throwing off the doctors if you are insisting it is Ankylosing Spondylitis if your disease does not quite meet that diagnostic criteria.

I think this is part of the problem that woman face. We DO have AS it is just that it can be slower to progress and often presents differently in the early stages with greater periferal(sp) issues.
I strongly believe it is just crazy to wait until a patient progresses to that stage before they can get the appropriate treatments.

It feels a bit like oh well you have all the symptoms of AS, you are HLA-B27 positive, most of your spine is stuffed. It walks like a duck, quacks like a duck, guess what you are a........... wait a second you have grade 1 Right side sacrolitis and grade 2 left side. Well you couldn't possibly be a duck because it is not at least grade 2 bilateral. WTF!!

Hi Georgia girl,

I am like Possi...stage HURT so bad that I had a pain pump implant just done. I haven't heard of that scale or the other one either. They may use it in their notes but I hear, ya' your fused here, there, just about everywhere and that's it.

This is the accepted grading scale which UT Physicians use as well as the TASC study.

When my GP ran me through the basic tests as well as x-rays of the spine and SI joints, the radiologist clearly stated no fusing seen in the SI joints which shocked me. The x-ray techs were training a new girl and they asked what was the doc looking for and they pulled up the x-ray and pulled out their textbook with picture of normal SI joints. None of us could see where there was a SI joint on either side. It looked totally fused to us. I went searching on the net and found UT Physicians and Dr. Reveille. Upon completing the first appointment, he stated my SI joints were gone aka grade 4. The x-rays we then sent off to the TASC unit that reads all the x-rays in Los Angeles and they confirmed both joints were grade 4. I asked Dr. Reveille why the first radiologist's report was so wrong. He simply stated that such arthritic changes are not studied very well and are but a footnote in radiology's courses and that the radiologist simply did not know what he was to identify. So, we ASers once again get the short end of the stick when it comes to a timely Dx because of ignorance.

and for me, when my radiology reports came back talking about "arthritic changes" (don't remember all the other words used), my rheumy at that time tried to convince me that it was OA, but I knew better, due to the way I flared, the other symptoms (during flaring) etc that had nothing to do with OA (like the GI stuff). I really felt his dx'ing it as OA was his way of avoiding having to prescribe me any meds beyond OTC nsaids. It was so infuriating. But then I moved on....