Dear Sue22, I could have done a PM, but I think it might be relevant to others as well. I remember you gave advice in threads on what the Gold Standard is for spine / IS joints MRI. And I've seen you do the same for stomach via Endoscopy I think it was.
I'll have to do a few rounds on it soon again, I've been too much of a mess lately.

I realise probably people have different views here, but I value your advice, and could you repeat it here, and if you have good insight into other relevant tests, please do those too!
Including blood work!

Love
gilth

first thanks but just restating what others on here have stated. so hope others respond as well

what i'd always been told here was that the SI joints should be imaged with MRI with STIR imaging. that's what i had done finally.

nuclear bone scans will also pick up the inflammation.

and for me, it was a CT scan that picked up the osteophytes (bone spurs) in my SI joint the best. at least the CT report talked about them while the MRI STIR report did not.

but for AS, all the reports i read say MRI with STIR imaging.

We should have a list easily available on these pages, that detail the relevant examinations for AS. Could be helpful for the times you run into doctors that are just not experienced enough with AS.

It brings to mind another question;

Why is the IS-joints preferred in diagnosis? I know they say they fuse with almost every AS patient, and can see why that would make a good red flag, but is it documented that it fuses there first ? -Because if it isnt, then the result is the doctors wait to diagnose you until they fuse, while other joints already may be fusing / have fused...wich seems a good reason diagnosis takes a long time in general. And they wont go looking at other joints meanwhile either...

I would think fusing is exclusive to AS, and if it is, then a more rigorous search for signs of fusing would be benefitial to an early diagnosis?

I don't know if it is the same for everyone but I have read the SI damage often shows up as one of the last symptoms especialy in woman. At least that is what I have read and what my rheumy has told me.

Yes this causes a huge delay in diagnosis and TNF treatment. I know with myself here in Australia you must have grade 2 bilateral damage to the SI joints before you are allowed to qualify for TNF's. I have a lot of other damage throughout my body and joints caused by the AS and fusion starting in my lower back, all before I had anything wrong with my SI's. (x-ray and CT images only) Only just recently have I qualified for TNF treatment after 10-15 years of symptoms (if you don't include the issus I had as a kid)

Personaly I think it is a crock that you have to wait for SI damage to show up. To say it politely.

my personal opinion / my experience is to agree with both of you. i don't think i will ever "fuse" based on my images, hence largely why i have the dx of undiff spondy instead of AS, but i'm still being treated the same way now. yes, i have bone spurs in my SI joint and my neck. yes, i have "arthritic" changes in my hands (also seen in an MRI, when i tore a ligament that needed to be imaged). but i'm also told that "bone spurs are common as we get older". so i end up in a grey area when it comes to imaging. and thus that may be one reason for why it took me approx. a dozen years and approx. half a dozen rheumatologists to get dx'ed.

thus for me, what it took was a doctor that didn't just look at one symptom, but put it all together. for those of us without obvious blood or imagining results, putting it together the old fashioned way is important.

for me those things included:
gastritis plus inflammation of my ileum plus IBS symptoms.
enthesitis to the point of tearing tendons and ligaments, tons of tendonitis.
a few pronounced skin rashes.
dry eyes.
mouth sores.
neck/spine/SI inflammation and osteophytes.
arthritic changes in other joints.
Plantar fasciitis and achilles heel / tendon pain.
so nothing that screams AS, but plenty that says "inflammatory arthritis".
by themselves the symptoms may not add up, but together they do.

can say that the LDN has helped the enthesitis. the flector patches have helped the SI inflammation. the probiotics have helped the gut. the various supplements? plus the LDN? have helped (haven't had dry eyes or mouth sores or a rash in a long time and feel much better in between flares). so even though i'm not on a DMARD or biologic (yet), things are controlled much better now than they were before. my biggest problem now is that i still flare and need to prevent that.


i like this article in discussing the symptoms of not just AS, but its cousin undiff spondy. i liked it and similar articles by the author so much, that i flew down to see him. he's the first rheumy that dx'ed me. now because of the letter he wrote back to my GP, i'm seeing a good rheumy up here where i live. too bad it took a trip out of town to get to that point. but we do what we've got to do:

http://emedicine.medscape.com/article/332945-overview

My understanding was that the sacroiliac joints are used because they are the hallmark joint for AS, and for the first point of damage of AS. If you have the inflammatory changes in other parts of your spine only, then it is supposedly more likely to be one of the other spondy disorders.

Of course as aussiegirl has said, that doesn't fit with the experiences of women, or of people who manage to keep inflammation under control (and don't ever fuse), and it doesn't seem to fit what is now being discovered in AS research in Leeds (UK).

There is now some thinking that whole spine MRI should be used for diagnosis, as in this slide show (you might be able to access his paper on the same subject) by Dr Alan N. Bennett http://www.rheumatology.org.uk/includes/documents/cm_docs/2010/h/hall04_wed_1100_bennett.pdf
I suspect a lot of rheumies won't have caught up with this thinking yet though.

One interesting thing I noted was that 23% of clinically active AS patients and 38% of clinically active axial-SpA patients "have no acute MRI sacroiliitis", and that the thoracic spine is the commonest location of spinal lesions. There are references on the slide show for those stats. On another slide he says that while SIJ scans are useful, there is a maximum 62% correct diagnosis on SI scan alone.

Gives hope for those of us with significant upper spine stuff going on and little to show on SI MRI.

If you can access his whole paper, and the couple of linked papers he refers to, you might get a better sense of what he is describing and recommending.

Hope you don't mind me asking this here but it is related.
Is there any other desease/condition that causes fusion of the SI's?

I ask this because my dad has mostly fused SI's and all the same symptoms I have. I am HLA-B27 positive so I had to get it from someone in the family. However doctors will not test dad for this gene and are blaming his symptoms on stress and other rubbish.

In my mind there is no question what is wrong but it would help if I knew more regarding the SI fusion.

grrr...when I hear stuff like that "blame it on his age"...I feel an urge to wrap my hands around that doctors throat and spoonfeed him by force some magical mixture that gives him a half year of what that patient is going through. I bet the poor excuse for a specialist would not be able to cope with work, not be able to handle a social life, not be able to function properly and would never get a clue as to why.

I am with you gilth.
Dad is only 52 this year and his dad had the same issues as both of us as well. I would call that a strong family history wouldn't you?
I am pleased I am getting treatment but feel sorry for my dad who is getting nothing. His gut is ruined from years of overuse of over the counter anti inflamatories. He has a physical job driving a mini litter truck where has has to empty park bins, clean up illegal dumps etc.. He falls asleep at work from the exhaustion, falls down because the pain buckles he knees.

It is just so frustrating that he has all the symptoms including the all important SI fusion combine that with my HLA-B27 positive and unlike me he has very high ESR and CPR bloods and yet they will not test him nor treat him. grrrr

Now getting back to your original post sorry about the diversion.
Sue what is the going thinking on blood work? My ESR CPR are only ever slightly elevated. Another creterior for TNF is very high ESR CPR rates. My rheumy got arround this by giving me steriods for 3 months as a reason for my low rates.

inflammation and SI joint disfunction, yes.

fusion, not to my knowledge. will be curious to see if anyone else like mig knows otherwise.