Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group need diagnosing

Dear all. I've had joint pains for about 2 years now, mainly in my lower areas (one heel, both knees, hips and lumber area). During this time I've done the rounds of anybody and everybody and I'm sure many of you have done that: podiatrist, pilates teacher, 'myofascial release' massage, chiros and physios. Nobody could find anything.

Then I read about AS and wondered if I'd got this. I went to see a rheumatologist and he concurred that this may be the case. After having had the HLA B27 it seems I'm negative and was really surprised as I'm in agony in my sacrum. I asked if there was a possibility that I might be the minority who don't have B27 but DO have AS and he said 'well that minority tend to either have psoriasis or a history of bowel trouble, and you've had neither'.

So, is he right or could I still have it? If I did have it and am B27-- is there any reason to adhere to the starch diet or not. And for those of you that suspect NOT AS, would you have any advice on how to search further for the root of these joint pains?

Thanks
Leo

PS: I've no tender points to speak of as in Fibro diagnosis.

Hi, Leo:

It is a good point to diagnose yourself through diet. The best way to kick this off is either with the Cayce 3 day Apple Diet or a slightly longer fast. I can email you the chapter on fasting, written by my friend Dr. Garten, if you are interested.

Whether you are B27 or not, the NSD will work; more quickly if there are no complicating factors like candidiasis (the fasting will greatly reduce this, btw).

There are many false negative B27 tests, so that is another possibility. You might check out the symptoms for PreAS; (5) Early Ankylosing Spondylitis for more information.

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.

DaVinci, the only definitive test for AS is an X-ray of the sacroiliac joints that demonstrates either bilateral sacroilitis or fusion. If that's not there, then it's not AS. If it is there, then AS is ruled in (although the diagnosis is not definitive, as Reiter's Syndrome, psoriatic arthritis, and a few other arthritides can also cause bilateral sacroilitis and fusion).

The risks are, of course, the X-ray exposure.

___________________________________________
-Mike
Certified Mad Doctor (in training)

Hi,

B27 negatives are less likely to follow the "classic" SI, lumbar and working up the spine damage that (some) of the +ve experience.

The arthritis can preceed the signs of the other related diseases conditions.......such as IBD....

The blood markers for inflammation CRP and ESR are less likely to be above the normal.

The other SpA arthritis can be pretty nasty.......and bing B27 -ve with some Dr.s is a definite rule out so maybe change your DR.

What scans have been taked of your sacrum?

David

Except if you're a woman, then radiological changes sometimes don't occur for years. I was lucky in that I was DXed early on with RA and wasn't written off completely as having an hysterical condition and imagining my body was in pain. When I was DXed with AS I had a very good rheumy who based his DX on the checklist kind of thing, like the Rome criteria, range of motion, peripheral joint involvement, heel pain, eye problems, case history, response to NSAIDS, morning stiffness that got better with movement. His thinking was that even without radiological changes women did get AS - - it just took longer for the fusion to occur, a painful process as we all know. So he treated me as if I was well on my way to fusion, in the hopes of preventing mechanical damage from that, first DX was undifferentiated spondy. Then the SIs started showing damage on the X-rays shortly thereafter and bingo! I was in our special club here Technically fusion has to be present (the ankylosing part) but if the docs wait around for that to happen the damage is done, and with the new DMARDS waiting could cost you a lot of mobility, since they will (hopefully) retard the process. I'm on Arava, haven't had any more fusion in the past almost 3 years. I am so thankful I had the luck to go to an enlightened doctor who thought out of the box. Prevention is key here, not damage control.

And a weird footnote, the first body part I had fuse was my foot

Cheryl


My guy

If you can't be kind, at least have the decency to be vague. Author Unknown

Hi

Welcome to the site. I have been tested for the HLA B27 Gene twice and both times it came back neg. I don't have psoriasis or a history of bowel trouble either. But I do have AS in a BIG way.

John

Hi MIke, I have to say I'm with Cheryl on this. I had my first full blown AS flare in 1991/92. Iritis, couldn't walk when I'd been sitting for any length of time, back pain like you wouldn't believe (well, actually, you would). It lasted for over a year. They took xrays at the time and all they showed was a slight scoliosis to the right. No SI damage whatsoever. No diagnosis of anything, nothing definitive except that I'd never have RA which was determined through many blood tests taken to figure out why I was getting recurring iritis.

In 2001, same thing with massive violent muscle spasms in the torso replacing iritis. This time there was damage to the SI showing on the xrays and I was diagnosed after testing B27+.

AS works very differently in women than men, and just because there is no xray evidence, doesn't mean AS isn't present. It just means it hasn't done the damage yet if it is present.

I'm not saying it's definitely AS in this particular case, but asking that you be careful not to make blanket statements about this stuff, OK? Blankets have a tendency to become moth eaten and full of holes.

Hugs,

Kat


"I haven't failed. I've just found 10,000 ways that don't work."- Thomas Edison