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

Hey Mike!

I just wanted to say that although radiographic evidence of SI involvement may be definitive, I don't think it's absence should definitively rule out AS. It takes time for this damage to show up, and that time shouldn't be spent hearing that there is nothing wrong with us.

Too many (especially females) have endured disbelief from docs when the truth is limping about in front of their eyes. I realise doc's need something concrete on which to base a dx, but in the absence of evidence they should consider seeing a patient again at a later date instead of insisting nothing is wrong. Just my seriously unqualified opinion of course.

mig

Diagnosis cannot be ruled out on the basis of HLA b27 negative status.
Also diagnosis cannot be ruled out on the basis of absence of IBD or absence of psoriasis

link to "repost of diagnostic criteria for AS and spondyloarthropathies"
Note that neither set of AS criteria (Rome or New York) lists HLA b27 positive status as necessary for diagnosis.
(I apologize for any broken links, the original post was made some time ago.)

link to "new articles; early diagnosis of axial spondy"
This set of articles is challenging.
Here is my understanding of the basic concepts:
Xray changes, which are necessary for the diagnosis of AS by established criteria (Rome criteria or New York criteria, see link above) are recognized to quite slow to develop. Combinations of features found in association with spondyloarthropathies can be used to indicate a likelihood of diagnosis of "axial spondyloarthropathy" - which MAY represent an early form of AS before xray changes can be found. Absence of any particular feature (such as HLA b27 positive status, or IBD, or psoriasis) does NOT eliminate the diagnosis of axial spondyloarthropathy, rather it makes a diagnosis less likely. Conversely presence of any particular feature (such as HLA b27 positive status, or IBD, or psoriasis) does not establish the diagnosis, rather it makes the diagnosis more likely. Combinations of features make the diagnosis of axial spondyloarthropathy even more likely. The authors suggest that finding combinations of features which bring the likelyhood of diagnosis to 90% or greater-can be taken as indicating a positive diagnosis of axial spondyloarthropathy.

This set of articles relies on understanding what is "inflammatory back pain"
"Inflammatory back pain" is back pain which has the following characteristics:
1. Early age of onset < 40 years (frequently in the 20's).
2. Insidious onset.
3. Duration usually > 3 months prior to consulting a physician.
4. Associated with A.M. stiffness.
5. Pain improves with exercise, worsened by rest. "

Maybe you have some other features, such as heel pain, or positive family history, or perhaps nail changes indicative of psoriasis without the skin changes. As Loz mentioned, in some cases of psoriatic arthritis the arthritis precedes the psoriasis.

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Edited by Evelyn on 07/29/04 07:34 PM (server time).

Hi,

Being all in your head is rubbish, more likely it's all in your neck, hips and spine.
Just because your Dr can't diagnose it, is not your fault so do n't blame yourself.

There's nothing worse than being very uncomforatable and having to justify it to yourself and the DR.

Have you referred to a specialist? Or is this a GP/Primary Carer Diagnosing you!
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One of the issues here is that there are so many things it can be and having a blood test on a good day is worth nothing, it's the bad days that count and that's when you go see the Dr and get the tests.

My tip is a good Dr or PT will spot problems on a physical.
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I'm a negative as well, took years and years to get a diagnosis, my message is DON"T GIVE UP! Having said that there's lots of B27 +ves here who have had similar problems getting diagnosed and that's with a history of AS and autoimmune disease in the family.
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Just a few months back I had a fight with my GP over b27-ve having SpA at all.....let alone AS! she took me off all meds, or tried to and I spent another 6 months in hell again.
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I have IBD but that only used to manifest itself after taking nsaids? With many the arthritis shows before the IBD anyway. Usually shows up in the knees and ankles before it gets into the spine, hips but everyone is different.
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FM is n't one to be trifled with either, or the related pain syndromes, they can be pretty horrid and difficult to treat.
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One of the diagnosis steps is inflammatory back pain eased by nsaids which returns after ceasing the med! (You could try that yourself go buy some voltaren or naproxen pills form the pharmacist, they are good nsaids with quite a low gastric risk). See what happens!
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B27 -ves

ESR and CRP may be in normal ranges, mine only gets up to just below the threshold from normal to elevated and thats when I have raging SpA and IBD. Apparently the negs are known to have fairly normal ESR and CRP.......you need tests for chronic inflammatory markers.

Usualy elevated globulins IgA and or IgG.......other counts can be affected and it may need a really experienced rheummy to spot it.

There are other members of the AS family the SpondyA's, Reactive arthritis and unspecific or unilateral SpA/AS.

Keep going! Do n't let an idiot Dr phase you out!

David

Fusion is END STAGE of the disease process.

to KICKAS.

There are a lot of people here on KICKAS, that are HLAB27 negative.

As for the NSD, why not, give it a try. It is not going to hurt you.

The rest of my post is my normal welcome information and is well worth a read.

You will find this site and the people on it very supportive, knowlegeable and experienced. One of the great aspects of the site is that people share experiences.

Have you been through the normal battering of tests, XRays, MRI, Catscan. Have you had a blood test done, HLA-B27 positive or negative, Rhuemtoid Factor, ESR and CRP readings.

Look around the site, there is a lot of useful information, the following are things you should look closely at.

The NSD No Starch Diet is well worth trying, many people here have had great success with the diet, some have managed to come off all medications on the diet. If the diet works for you, then that is got to be better than taking medications. Remember though that the diet does not work for all of us. If you are serious about trying the NSD, try starting with the 3 day Apple diet first, I think it is a system cleanesing/detox diet. As to the NSD, there are differing levels of the diet from strict NSD to LSD to Gluten Free. My suggestion is to try the strict NSD first and migrate down to the lower levels experimenting with various foods and there effects.
Here are some links. (just click on them)
AS Dietary Primer
AS Foods
No Starch Forum
No Starch

As far as medications, have a look at postings related to Enbrel/Remicade/Avara/Humira these are relatively new medications to treat AS, the downside is that these drugs are extremely expensive and you will need to check if you are covered. Many people have posted great success on these medications.
Check out the AS Pharmacy Forum
Medications

Myself, I think the answer lies in finding the right combination of Diet/Medication/Exercise that suits you, everyone is different.
There is a saying here "Use it or Fuse it", exercise is really important. Some suggestions are Yoga, Pilates, Tai Chi.
Hydrotherapy is also well worth trying.

One other thing, learn as much as you can, you may find your Doctors knowing very little about AS, and I suggest that you become proactive in your appointments, ie suggesting and discussing things that you find on this site with your Doctors.

Look around the site, there is a lot of useful information here.
If you have any questions, post them up and you will be surprised at the amount of responses.

Another thing to watch out for is Uveitis (a form of Iritis), which is common with AS.
UVEitis
If you get this see an eye specialist immediately, as permenant eye damage can occur if not treated.

The following link's are some light reading on AS.
AS Information 1
AS Information 2
This link also descibes the link between IBD (GI) and AS.
AS Information 3
AS Information 4

Also if you go back to the main page KICKAS Main Page you will find the following sections with great reading information.
Medical Center
Diet Center
These sections are well worth reading.

Also if you need a good laugh there is the Jokes Forum
Humor

Sorry for all the reading material.
Take Care
Wayne

Bump!
Bringing this up to the front for DaVinci, all you do is add a post at the end and the page comes to the top, like this.

Hi, I am glad to read your post. I too just had an mri and at first the nurse said it was neg for joint disease, and I thought I was some sort of mental case since my lower back and si joints hurt constantly. But when my rhuemy called, he said something about the joint itself is ok for now, but the muscle around it and tissues are inflammed? Didn't quite understand, but I see him this week and he said he will go over it then. He seems to think it is in keeping with the as diagnosis, and it is reassuring to read these things here, because sometimes I feel like I don't fit quite in the as category, and other times it is a PERFECT fit. The morning stiffness and better with exercise is exactly me though. Anyhow, at least we all have each other!

Aimee

I think if you look at how much has changed in the world of Arthritis in the last 25 years or so, its not too difficult to challenge these Dr.s dianosis. I remember being told, that A.S. was a MALE diease, FEMALES simply didn't get it! The biggest change has been in thinking that Arthritis and A.S. in particular, is a connective tissue diease, not just bones. That might by itself account for the involvement in so many different areas: eyes, lungs, G.I., Heart.
If your Dr. suggests this might all be in your head, that is saying more about his inability to uncover the problem: change Dr.s.