Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group AS or Not?

Hi,

Do I really have AS? I have the HLA-B27 marker, x-rays of SI joint-hips are normal. Stiff in the morning and at night, low back pain, neck & shoulder pain. Since my x-rays are normal does this mean I don't have AS? Thanks for your input.

DebbieZ

Hi, DebbieZ:

It sounds like more split-hair semantics, but until you actually fuse your conditions is probably not technically AS. There are NY and Rome criteria which are basically ROM tests for AS, but you might be under that radar if you are early enough. You might qualify for "pre-AS:" https://www.kickas.org/medical/AN2.html (item numbered 5). I would also add points for any blood relative with IBS, UC, Crohn's, Reiter's recurrent iritis, any PsA or even a 'diagnosis' of severe RA.

There are some general differences in the progression of AS damage from KRA (the disease that actually causes the condition AS) between men and women. Women seem to fuse more slowly, probably due to longer lymph ducts within the mesentery, but every AS case is unique.

From your description, I would hazard a guess that you do have at least pre-AS, and a bone scan might reveal some inflammation better than X-rays.

If you did an apple cleanse and followed the NSD for a while and your pains greatly relented, it would be a certainty; then you could count yourself fortunate that you do not yet have the damage and could probably avoid much pain and misery in the future.

Good luck to You,
John

Hi

I believe that if you are indeed in the early stages of AS, your SI xrays may 'appear' normal. This does not mean that another area of your body doesnt already show damage due to the inflammitory process.

Which leads me to ask, have they done an xray of your lumbar spine or neck area??

Below is the repost of the "diagnostic criteria" post from some time back. I’ve changed some of the links, since several of the original sources aren’t still on line.

The term spondyloarthropathy is an umbrella term for a family of conditions which includes ankylosing spondylitis, certain forms of psoriatic arthritis, enteropathic arthritis (arthritis associated with inflammatory bowel disease), reactive arthritis/Reiter's syndrome (arthritis associated with a known or likely preceding infection of the genitourinary tract or the intestinal tract) and "undifferentiated' spondyloarthropathy.

There are two sets of established criteria in the medical literature for the diagnosis of ankylosing spondylitis. These are the ROME CRITERIA and the NEW YORK CRITERIA. For the definite diagnosis of ankylosing spondylitis according to established criteria, there generally needs to be evidence of sacroiliac/spine changes on xray exam. Changes to the xray exam may not occur until relatively late in the disease process, so early AS may not be found by these "AS" criteria.

There are also criteria for the diagnosis of spondyloarthropathy that do not necessarily require evidence for changes on xray. Again there are two sets of established criteria in the medical literature for the diagnosis of spondyloarthropathy. These are the ESSG CRITERIA (European Spondyloarthropathy Study Group) and the AMOR CRITERIA. So someone with early AS can be given a diagnosis of spondyloarthropathy which may then evolve into definite AS in later years. If a person with spondyloarthropathy has associated psoriasis, then they have psoriatic arthritis. If a person with spondyloarthropathy has associated inflammatory bowel disease such as Crohn's disease or ulcerative colitis, then they have enteropathic arthritis. If a person with spondyloarthropathy has good evidence of known or likely preceding infection just prior to the onset of joint pain, then they have reactive arthritis/Reiter's. If a person with spondyloarthropathy does not have features of psoriasis, inflammatory bowel disease, or evidence of preceding urinary tract or intestinal tract infection, then they would have undifferentiated spondyloarthropathy. ANY OF THESE SPONDYLOARTHROPATHIES CAN EVOLVE INTO AS, BUT DO NOT ALWAYS DO SO.

ROME CRITERIA FOR ANKYLOSING SPONDYLITIS:
Rome Criteria (1961): Diagnosis of AS when any clinical criteria present with bilateral sacroiliitis [by X-ray] grade 2 or higher
1. Low back pain and stiffness for >3 months which is not relieved by rest
2. Pain and stiffness in the thoracic region
3. Limited motion in the lumbar spine
4. Limited chest expansion
5. History of uveitis

Rome Criteria from:
http://www.emedicine.com/med/topic2700.htm#target5


NEW YORK CRITERIA FOR ANKYLOSING SPONDYLITIS:
New York Criteria (1984 ): Definite AS when the fourth or fifth criterion mentioned [Xray changes] presents with any clinical criteria:
[A. Clinical Criteria]
1. Low back pain with inflammatory characteristics
2. Limitation of lumbar spine motion in sagittal and frontal planes
3. Decreased chest expansion
[B. X-ray Criteria]
4. Bilateral sacroiliitis grade 2 or higher [by X-Ray]
5. Unilateral sacroiliitis grade 3 or higher [by X-Ray]

New York Criteria found here:
http://www.emedicine.com/med/topic2700.htm#target5

MODIFIED NEW YORK CRITERIA FOR ANKYLOSING SPONDYLITIS
Bilateral sacroiliitis [on xray], grade 2-4, or unilateral sacroiliitis [on xray], grade 3-4 and any one of the following three clinical criteria:
1. Low back pain of at least three months duration improved by exercise and not relieved by rest
2. Limitation of lumbar spine motion in sagittal and frontal planes.
3. Chest expansion decreased relative to normal values for age and sex.
Modified New York Criteria found here http://www.medal.org/docs_ch22/doc_ch22.21.html#A22.21.05

ADDITIONAL DESCRIPTION OF CRITERIA FOR DIAGNOSIS OF AS
The diagnostic criteria for ankylosing spondylitis.
1. Limitation of motion of the lumbar spine in all three planes: anterior flexion, lateral flexion, extension.
2. History of pain in the lumbar spine or at the dorso-lumbar junction.
3. Limited chest expansion to 2.5 cm or less, measured at the fourth intercostal line.
4. sacroiliitis on xray of the sacroiliac joints.
The sacroiliitis is graded on radiological criteria:
Grade 0: normal.
Grade 1: suspicious.
Grade 2: minimal abnormality, small areas of erosions or sclerosis, without alteration of joint width.
Grade 3: definite abnormality- moderate or advanced sacroiliitis with irregularity, one or more erosions, evidence of sclerosis. Partial ankylosis
Grade 4: total ankylosis.

Definite ankylosing spondylitis:
Grade 3-4 sacroiliitis with at least one clinical criterion.
Or grade 3-4 unilateral or grade 2 bilateral sacroiliitis, with clinical criterion 1 or criterion 2 and 3.

Probable ankylosing spondylitis: Grade 3-4 sacroiliitis without any clinical criteria.
This set of criteria for AS is from "Drdoc" website:
http://www.arthritis.co.za/ankspond.html

ESSG (EUROPEAN SPONDYLOARTHROPATHY STUDY GROUP) CRITERIA FOR THE DIAGNOSIS OF SPONDYLOARTHROPATHY:
Inflammatory spinal pain OR synovitis, assymetric, predominant in lower limbs AND one of the following:
1. positive family history
2. inflammatory bowel disease
3. urethritis, cervicitis or acute diarrhea within one month before arthritis
4. buttock pain alternating between right and left gluteal areas
5. enthesopathy
6. sacroiliitis

ESSG criteria can be found here:
http://www.emedicine.com/med/topic2700.htm#target4
and here:
http://www3.utsouthwestern.edu/cme/endurmat/lipsky/alg_apdx/app_p.htm See section 2A

AMOR CRITERIA FOR THE DIAGNOSIS OF SPONDYLOARTHROPATHY
A. PAST OR CURRENT CLINICAL MANIFESTATIONS:
1. Back pain at night and/or back stiffness in the morning=one point
2. asymmetric oligoarthritis=two points
3. gluteal pain without other details=one point OR alternating gluteal pain=two points
4. sausage like digit or toe=two points
5. heel pain or other enthesopathy=two points
6. iritis=two points
7. non-gonococcal urethritis or cervicitis within 1 month before the onset of arthritis=one point
8. diarrhea within one month before onset of arthritis=one point
9. past or current psoriasis and/or balanitis and/or inflammatory bowel disease=two points
B. XRAY CHANGES
10. sacroiliitis (stage 2 or above if bilateral, more than stage 2 if unilateral):three points
C. PREDISPOSING GENETIC FACTORS
11. Presence of the HLA B27 antigen and/or positive family history for ankylosing spondylitis: two points
D. RESPONSIVENESS TO TREATMENT
12. Improvement within 48 hours after initiation of a non-steroidal anti-inflammatory drug: one point
Patients with a total score of six points or more are classified as having a spondyloarthropathy.

Amor Criteria found in:
http://www.emedicine.com/med/topic2700.htm#target4
and here:
http://www3.utsouthwestern.edu/cme/endurmat/lipsky/alg_apdx/app_p.htm] see section 2B

FLOWCHART FOR DIAGNOSIS OF SPONDYLOARTHROPATHY from MA Khan article:
http://merck.praxis.md/images/cpm/RH/390-03.jpg
from
http://merck.praxis.md/bpm/bpm.asp?page=CPM02RH390§ion=report&ss=2

print version of report:
http://merck.praxis.md/bpm/bpmviewall.asp?page=CPM02RH390

Thank you all for your responses. One thing I should have mentioned is that my father had RA and AS. My half brother has AS. Bad family genes huh.

DebbieZ

Debbie, I just received the current issue of Spondylitis Plus and it said that the average length of time from first symptoms to changes on the x-ray is 7.5 years. Some Drs. still think that women don't get AS or only have mild forms.

Jane

Thank you for the DX Criteria. It was a good thing to post. I have been DX with undiff. spondyloarthropathy/AS. We believe my maternal grandmother had it. Bottom line: all these diseases are a PAIN. I fight every day and it is nice to know I have the support of others like me in my fight. We will win. Thank You Kick AS.
Kathy

Hi Debbie, welcome.
AS or not? Just because your xrays are looking good, doesn't mean you don't have AS. Having the HLA-B27 gene doesn't necessarily mean you have AS. It's only after years of neglect and misdiagnosis that damage starts to show up. So in answer to your question, only your doc can tell you that. I hope you have a good medical support team to work with you and give you the proper diagnosis. I hope this made sence and I didn't confuse you more.
Let us know what your docs come up with
Cindy

Debbie, welcome to KA. I'm glad you found us!

First, let me just say that just because you don't have damage showing on your xrays doesn't mean you don't have AS. It does mean that there's no damage showing on your xrays. It will make it difficult to get a specific diagnosis for you at this point, but given your family history, B27+ status, and the other signs you are showing, AS is a good bet.

It can take over 10 years for damage to show in women and AS researchers have been working for the last couple of years to develop new diagnostic criteria that is not dependent on damage being visible on xrays.

I should have been diagnosed back in 1991/92, when I was in full AS flare. I mean full. Everything that could flare did, including my eyes and the fact that I could not walk if I'd been sitting for any (any meaning more than 5 minutes) length of time. But there was no damage showing on the xrays and I am a woman, so nobody considered AS and they didn't bother doing the B27 test on me. If they had done, they would have found that I am positive for that tissue-type. Fast forward 10 years, my symptoms aren't as drastic, but there was damage showing to my left SI and 4 of my thoracic vertebrae, so they did the B27 test and I was diagnosed within a month or two.

So, my answer to your question would be ... no, it does not mean you do not have AS. I wish I could say otherwise, tho. AS sucks.

Many hugs,

Bumping up Evelyn's excellent post!