Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Very confused now

Hi. Ive never posted anything on here because i wasn't sure id got AS. I always thought I had with pain/stiffness in heels, knees, one hip and lower back. I'd done the round of physio/chiro and pilates but nothing helped. One doc said Fibro but as he couldn't find any pressure points both he - and i - knew that this was garbage.

So I came around to AS and had the test for HLA-B27 which -to cut a long story short - was negative, and I was gobsmacked!!! So the GP smugly looks at me with that patronising grin that decares 'see, we were right all along. it's all in your head'.

Nobody can explain these pains in these classic AS sites and I pointed out that SOME people who have AS aren't B27 to which the doc said 'but these cases usually have signs of inflammatory bowel disease/or psoriasis, and you have neither'.

So, can you tell me a) Can I still have AS if negative/no Psoriasis/no bowel condition? b) If I have AS but am B27 negative is there any point pursuing the NSD or is this only viable for the positive patients.

Thank-you

Leo

Leo,

first, the HLA B27 test gives many false negatives

second, if you are -ve and have AS you will have one of small number of other HLA types which cross react with B27, the relevant molecules are very similar

& thirdly if you are -ve the diet is still effective. A response to the diet would confirm AS.

And what's he then that says I play the villain
When this advice is free I give and honest

i too am hla-b2 7negative and have no inflamitory or other bowel disease.
rummy diagnosed AS as soon as he saw my x-rays and bone scans.
was put on enbrel for six months with no change then was put on remicadde at the highest dosage and had some respit from the swelling in the hands and feet but no remission of the back symptoms. my lower back and sacro are fused along with the thoracic spine.
my rummy also was questioning the fact that i had AS so he sent me to another rummy
the chief of rummy's at university and he confirmed the AS,
fused ribs and all.. ws taking off of remicade because of nerve damage and am now only
on immuran and pain killers.
hope this helps .

keep on kicking AS
john

Leo,
Welcome to KA. You've come to right place. The combined knowledge and tremdous support offered here is astounding. Whatever the dx..sometimes you know in your heart/and bod that you can become more proactive in your own healthcare. Which means researching and reading as much as possible.
I also wait on a dx. At this point it just doesn't seem important anymore after reading stories of others that have waited ten years and up.
They've all been there and know how it feels.
Klem

If they don't run the blood test within so many hours of collection,(was it 16 hours? I know it was less than 24 hours...) the test always comes back negative.
I had two so-called rheumatologists tell me in the past two years that I did not have AS, even tho I DO have irritable bowel disease and a nice blotch of psoriasis, because I'm also testing out negative for the HLA-B27. So far....

I had a so-called neurologist this spring, after I confronted her with withholding my MRI results for 2 months, showing I did have major problems with my cervical spine, JUST LIKE I TOLD HER OVER A YEAR AGO, sit there and make up a completely wild and fantasy styled story somewhat along the lines that the tooth fairy must have made my c-spine look like that at birth as I had no disease and I therefore had no pain. Yes, no disease and no pain. I guess she thought I had the nervous system of a houseplant. There are areas of my body you can stick a pin into and I don't feel it, but I'm still a mammal and I didn't get that way without feeling something in the interim timespan that could be called "pain." When I finally get my sarcasm under control, I will be writing a letter to my insurance company documenting just what she's been up to jerking my insurance around as I figure she's not only a nutball but a very sly and clever one.
Fortunately, back when we had real insurance, I was correctly diagnosed by a real doctor of osteopathy, or DO. I had enough things explained to me at that time that I can now tell if someone is on the up and up or not.

I was avoiding certain foods before I found this site as I knew they gave me problems, not because anyone told me to, but I could notice my poor reactions to them. I was told to go to a gastro doctor once but decided that it was much easier and cheaper to just start eliminating problem items than to go thru a complete battery of tests. What was a doctor going to do for me? Probably put me on some drug that made it even worse, given their lousy track record.
I have no idea if the NSD will help you or not. I have heard a lot of anecdotal evidence from another board from women who are perpetually on weight loss diets (ugh...) that when they started doing Atkins or South Beach their joint pain started clearing up as a side effect, which I find VERY interesting as both of those diets restrict carbohydrates, and therefore, by default, starch as well. I think even if you do not have a "diagnosed" disease , you can improve your health dramatically by cleaning up your diet and eating non processed, whole foods. You should also, regardless of diagnosis, be taking at least a multivitamin, vitamin E, calcium, and magnesium supplements, and some sort of good essential fatty acids. Most processed foods today are adulterated with starch. I don't believe any humans were meant to consume that much of it, let alone the likes of me, because of how the body processes it.
The side effects of the diet and supplements are minimal compared to destroying your kidney function or stomach on NSAIDS or damaging your liver on Tylenol...there is no question in my mind on the merits of at least trying the diet.

There is one and only one definative test for AS, and that is a radiograph of the sacroiliac joints that demonstrates bilateral sacroilitis or fusion.

If they haven't gotten that on you, then they can neither rule in nor rule out AS.

Mike
Certified Mad Doctor (in training)

Welcome, Leo:

There have been many false negatives, as others have said and bilko is right-on: We do not often know that IBS or IBD is actually going on, especially in the early stages until NSAIDs can make these much worse.

In the context that AS is not a primary disease, but the result of many episodes of KRA (Klebsiella-Reactive Arthritis), it would be very good to make the proper early determination--like before the SIJs are damaged--but only if the doctors were able to prevent such damage (most are not, or WERE not, prior to the advent of the improved biological DMARDs).

There are other MHC types that are involved in AS, but here is a link about PreAS which might be helpful (please see (5) Early "ankylosing spondylitis"). I would add to this list any blood relative with anything related--a PsA, RA, CD, iritis, TMJ, etc.

Best Regards,
John

"Unfortunately, the soul’s need for learning often brings about the full-blown disease. And it must be cared for creatively, or allowed to take its course."
William A. McGarey, M.D., Director of Medical Research, A.R.E Clinic.

Hi Leo

I was tested for the gene and it came back neg twice. I was told that there was nothing wrong with me and sent on my way. My head was stuck and turned to the left and facing the floor until it broke because the doc's kept telling me there was nothing wrong. Until they found my neck was broken and when they operated to fix my neck then they told me I had AS.

John

Hi Leo and ...Welcome to KA!

Your list of symptoms suggest that you belong in here and will likely benefit from the vast knowledge and friendly folks that really do understand and know that whatever the underlying cause may be,... it is not all in your head. In many cases, the symptoms will show up long before the evidence.

Welcome to our group!

mig