Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group No Radiologic Evidence

I understand what you're saying about the difference of stiffness and immobility, usually the pain and stiffness occur during the fusion process and true immobility occurs when fusion has occured but due to the stiffness, the patient will usually have a decreased range of motion....as far as reading my statement in a medical book, you won't find it unless you're looking at a Physician's Diagnostic Procedure manual...but I don't recall saying that was a quote from any medical reference website, journal or book, it was just my opinion and I also don't recall saying that AS always starts in the SI joints but please read the statement below, it's from the AS diagnostic section of the Spondylitis Association of America.

The hallmark of AS is involvement of the sacroiliac (SI) joint. The x-rays are supposed to show erosion typical of sacroiliitis. Sacroiliitis is the inflammation of the sacroiliac joints. Using conventional x-rays to detect this involvement can be problematic because it can take 7 to 10 years of disease progression for the changes in the SI joints to be serious enough to show up in conventional x-rays. Another option is to use MRI to check for SI involvement. To diagnose ankylosing spondylitis, the sacroiliac joints (SI joints) at the back of the pelvis must be affected.

Whilst many AS patients have problems that originate firstly in SI joint/s it is not necessary that all HLA B27 associated Spondylarthropathies start there. My problems started first as a chronic diarrohoea (IBS) then inflammation of the manubrio-sternal joint (considered part of the axial spine) but still have no involvment of the SI joints. Interestingly both the SI joints and the manubrio-sternal jounts are close to areas of bone-marrow - perhaps this is no coincidence and has something to do with the immune disruptive nature for the disease.
Cheers David P

Jaybird, I hope you realize that my very first post in this thread wasn't directed at you or anyone else, it was just a generalized statement, you thought that it was directed at you because I just typed in the box below and you just happened to be the last person that posted....so please, just let it go, you've drug me through your Defcon 2 and Defcon 3...but here are the citations that you requested...

Ankylosing spondylitis diagnostic tests
There are two categories of diagnostic tests used to identify ankylosing spondylitis: imaging scans (e.g., x-rays, magnetic resonance images) that capture a picture of the spine and affected joints, and; blood tests that identify certain markers of ankylosing spondylitis.

Imaging Scans
In the early disease process, plain x-rays may be read as normal.To diagnose ankylosing spondylitis, the sacroiliac joints (SI joints) at the back of the pelvis must be affected. More accurate and earlier diagnosis can be done using magnetic resonance imaging (MRI scans) and or CAT scans (CT scans).

Blood Tests
An elevated CRP and/or WESR (sedimentation rate) can be found in any inflammatory state, including ankylosing spondylitis. As mentioned previously in this article, 90% of people with ankylosing spondylitis test positive for the HLA B27 gene. Having this gene, however, does not necessarily mean that ankylosing spondylitis is present or that it will develop. 8% of healthy Caucasians and 2% of health African-Americans carry this gene. In fact, a healthy person who carries this gene and has no relatives with ankylosing spondylitis has only a 2% chance of getting this form of arthritis.

You can read this for yourself at the following website....

http://www.spine-health.com/conditions/arthritis/ankylosing-spondylitis-diagnosis

Oh I see, trying to say I am old are you, oh and silly too......cripes me dear...........


I was going to comment on some of the additional posts here but, I had a pint of beer a moment or two ago so, best that I leave such comment until later.

Goodnight all.

Well as far as I know (which is about this far ---), that rheumy was wrong. I've been hounding my doctors about these very questions and I got very different answers.

My blood has never indicated anything abnormal. My latest Bone Scan revealed nothing either. My X-rays do show damage in the lumbar spine however and I am HLA B27 +. I also have Ulcerative Colitis.

The last time I saw my rheumy, I called him out on this very question and asked him to explain (read as justify) my diagnosis for me. He looked at the file for reference material before he responded and told me that there was NO wiggle room in my diagnosis. The fact that blood work and Bone Scans revealed nothing is completely irrelevant.

It seems that about twenty per cent of my rheumy's patients are in a similar situation. He is retiring this June and has walls covered with degrees and certificates from around the world and I respect his opinions a great deal. I asked him why this was and he told me "if you find out, let me know and I'll get a Nobel prize for coming up with the answer".

Oh and btw, he is not the doctor that diagnosed me so there is no chance of him trying to cover his [**BLEEP**] by telling me this.

I went through a period of self-doubt when all these tests came up negative and wondered if my condition was getting worse and I was suffering so much because I was mis-diagnosed. That was a bunch of worrying I didn't need.

These tests CAN be excellent indicators but they cannot rule anything out.

Chris

Just wanted to quickly comment on: "have no morning stiffness or soreness."

I was diagnosed with AS when I was 16, now nearly 22 years ago. And I don't recall ever having morning stiffness. I vaguely remember feeling bad in the morning before my lumbar fused, but I think that had much more to do with not being able to sleep because of lower back and hip aches.

I always used to get annoyed with rheumies because they didn't seem to want to believe I didn't get it as I am such a classic AS case apart from that.

As I was only 16, I've no idea what the specialists based their diagnosis on. It definitely wouldn't have been on X-rays or similar, because nothing would've shown yet. I think the colonoscopy was vital in their assessment as it showed Crohn-type lesions.

To me it sounds like you may need to find another specialist who will recognise colours other than black and white!

I have evening stiffness not am stiffness, I had Iritis 5 times in 3 years and only minor hip pain, but i got a diagnosis because of the iritis - the x rays showed some erosion in pelvis but it could have been consistent with child bearing at that point, I am HLA B7 +, bone scan shows inflammation, NSD helps, being active helps, warm dry weather helps, all the support here helps

all the best Kylie

Hello Karen...
I went full blown with the AS monster after the birth of my 2nd daughter 8 yrs ago. l5-si was fused. And other damage. Then xrays a couple years later were the same no change. Then about 2 yrs ago my former rheumy ordered more to update..and there was changes. Thats when he changed it from spondyloarthropathy to officially AS.

I think one key sign for AS..is the classic morning stiffness. I know when my hubby's back goes out...he feels better when he rests. I am in a world of pain when I am in bed too long. As it is I wake up doing the crab-walk. That morning stiffness and pain stays with me for a couple of hours...then I'm shuffling along...then around 4pm I "peak" ..and it's downhill from there...sore and stiff all over again. If I stay in bed too long I am so rigid that I cannot even unlock my knees.

I certainly hope you dont have AS. If after 14 years nothing is showing up...I can only hope it stays that way for you...I hate the AS monster. For the last 8 1/2 yrs it has been in my face non stop driving me to the brink of insanity at times.


take care... buggie

I want to thank those of you who replied to my post last evening. I appreciate the additional input and can see that there is a variety of symptoms and a variety of ways that doctors diagnose AS/spondy.

I wish the AS monster would get out of all of your faces and leave you alone, but if that can't happen, I wish everyone had a treatment plan that worked for them.

Many thanks to all,

Karen

Buggie - that description of "can't unlock my knees" I can relate to. I long to sleep through the night but I know that if I don't get up for an hour or so in the middle somewhere, I'm completely locked in the morning. I have to lie there gently trying to free up the different bits - knees, shoulders, hands etc. before even contemplating trying to get out of bed.

Morning stiffness appears to be the classic symptom of inflammatory arthritis that distinguishes it from, say osteoarthritis. Certainly it's the one question that every rheumy and doctor has asked me.