Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Is it always arthritis ?

Hey, Kat:


These are the things everyone with AS should be aware of, but I have no opinions except those provided by Professor Ebringer over many hours of "indoctrination" (aka lectures):

The HLA B27 antigen is present in about 8% of the conjugate N. American population.

Half of all people with B27 will, at some time in their lives, seek medical attention for "bad back," whilst only 5% of the non-B27 population requires medical intervention for this over the same period.

Nearly half of this group will go on to develop the clinical signs of AS, so about 20% of 8% equals almost two percent of the overall population. Many people have AS and will never know it; being an otherwise "mild" presentation.

Probably 1% of the population will develop AS to a severe extent that requires constant medical attention.

There are SIJ problems and even pelvic issues that are certainly not caused by AS, but these are usually due to trauma--and not insidious onset like AS. BUT AS HAS A VERY UNIQUE PRESENTATION: SIJ fusion. What OTHER disease causes this? Well, there are some that could mimic AS but these have ultra-rare frequency in the human populations.

When SIJ fusion is present, in addition to a history of AS-like symptoms, there is a 99.9% chance it is AS, especially if B27 positive (well, make that one a 5-9s event).

AS is an autoimmune disease that causes characteristic damage and presentation (as Hippocrates observed) is different in every individual, but there is a definitive constellation of attributes associated with AS that, when ignored, only make diagnoses more difficult, confusing the patient and making adequate treatments nearly impossible. I have witnessed enough misleading statements from both physicians and their patients to know that, aside from improper treatments, there will be just as often serious delays to begin those improper treatments. Hey--maybe that is a good thing: Should that be a rule? Anyone who cannot diagnose AS should never be allowed to treat it...

I hope I have answered Your question--I had little time earlier to clarify my position (which I hope is Ebringer's position of course because he provided me and so many others with tangible, repeatable, and sustainable RESULTS where nobody else has).

Regards,
John

Well put John...I especially like that you point out SIJ fusion and the fact that there is no other disease that causes this...I experienced SIJD after a near fatal car accident almost 20 years ago and it was well documented over the next few years, while undergoing follow-up treatment for my injuries, that the SI Joint did indeed fuse and then the other one followed suit, fortunately for me, my ortho suggested a "military posture" and prescribed a spinal corset to ensure that my spine would fuse straight.

I am beginning to wonder if there can be a false negative result on the B27 blood test. I have UC, my grandmother and one of my cousin's has some form of IBD. My brother and I have AS and psoriasis. Our mother started breaking bones, including her back, in her early 40's and I can remember my grandmother having her hands all knurled up, her knees swollen and taking Pred back in the 50's. She died of a perforated colon at the age of 98. I keep thinking that she would have lived to 100 at least, if she had been treated for her IBD instead of being left to suffer and die.

With all this family history, how could I be negative?
Donna

A lot of ASers are B27-, Donna, I wouldn't worry about that at all...you definitely have the family background that is so typical with auto-immune...and the disease to go with it, I'm so sorry, it's not something any sane person wants and certainly not anything I would wish on anyone...not even my worst enemy...Big hugs & much love, my friend...

For your information, SIJ fusion can also be caused by metabolic derangement in X-linked Hypophosphatemia and Mucopolysaccharidosis. To verify this, just Google it.

I have chronic sacroillitis and bilaterial SIJ sclerosis, amongst other things, and am in process of being worked up for both of the above. I'm also being evaluated for AS next month. It all started in my hips, toes and feet 30some years ago... as I always say, better late than never.

Deb Mc

John, that does clarify it. It was the apples to oranges reference that had me wondering, as you hadn't expanded on it. Thank you for that.

Warm hugs,

It is possible to have false negative results on the B27 test. Not sure why. Again, I'm relatively certain John or anyone other than me could explain it. I just know it is so.

Warm hugs,

Oh deb, sorry, I'd never heard of that, by the way, so nice to meet you and welcome to KA! I hope your AS evaluation goes well, I wonder how they will differentiate between AS and metabolic derangement in X-linked Hypophosphatemia and Mucopolysaccharidosis in regards to your fusion. Again, welcome to KA!!

I'm going to make an observation here, solely because I'm hoping it might help from a 'communications' standpoint.
I'm learning everyday like so many of us here. And, like a number of us, I suspect, I read through the threads with interest, concern and hoping that maybe I can add something to help.
I also, am not the most savvy when it comes to manipulating the use of the site, so I don't know all the tricks of the trade so to speak - ie. I don't know how to accurately use quote boxes, how to 'bump' a post etc, etc...
Sometimes this means I lose track of who said what when, in what order, in what context to what post etc...it becomes a bit confusing. So, often, I have trouble keeping things said in threads on track...
This thread has gotten a little out of whack for me I think...
But, I think that this might be important to know, given that we have had a number of miscommunications in recent past.
ie.
In this thread, I thought the question was about SI Joint trouble/pain in general and didn't specify joint fusion, so I was completely lost at John's statistics about AS and fusion as I wasn't 'going there' in my thought process at all. (because lots of things can cause SI pain, or trouble in general - not just AS) But reading now, it seems we are talking about fusion. Somewhere in the thread, I've lost that. But, the thread line seems to have changed since I checked in yesterday, because I find myself reading posts I read yesterday further down the thread then they were yesterday - so again, my lack of knowledge on how the thread works may be causing me to miss the progression of the thread. Are bumps happening so that I'm missing things? I thought I was progressing through chronologically...but I see posts are now out of chronological order. Or is it just that I'm having trouble keeping track day by day? - which is completely possible, believe me~I'm adding inability to concentrate to my symptom list.
At any rate, I wanted to use this opportunity to point out that while trying to track this thread, I have become completely confused and as a result can clearly see where a misunderstanding could arise and become one of those recent 'family arguments' we've experienced.
Just an observation...

Hi, Donna:

According to Ebringer, HALF of the AS+B27- patients who went to Middlesex AS Clinic RETESTED POSITIVE, so there are/were MANY false negatives.

Additionally, there are other Osp antigens that produce AS: CREG B7, B60, B31 just to name a few; there are simple enough explanations without any more complicated genetic scenarios.

Ebringer did state his observation over 20 years that non-B27 ASers do not have as severe disease in general--but non-B27s do not have this perspective--it can be a terrible disease even still.

Regards,
John