Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Confused !!!

Hi everyone, my blood test came back positive a few weeks back: that together with the increasing back pain, recurrent iritis meant that the doctor confirmed it was AS (also my brother has it, think I mentioned that in previous posts). Anyway, my x ray results came back last week: pelvic and lumbar x rays showed 'no significant degeneration' .... this is obviously good news in one way, but does this mean that when I see the Rhuemy next Monday that he will probably say I havent got as and send me away, never to darken his door again ??? Is the evidence of AS easier to see on MRI than X Ray (if so why didnt they give me one of those ??)Have any of you guys had similar results ?? The thought of being shunted from doctor to doctor for full diagnosis is not doing anything for my confidence right now .... any thoughts/ideas/suggestions ????
Jayney x

o newbie, jayney, aloha

this doctorin' stuff is the pits...don't much like doctors, needles or any of this stuff, myself

your doctor told you last week that you had as, right ?
well these dudes (or to be correct dudettes) have about half a dozen diagnostic criteria they use...NOW...
in their world, they give a point for everything you do have that indicates as, and if they get enough points then
they say you've got as...that your xrays come back showing no damage (yet) doesn't mean he's going to
unroll the whole ball of string.

(back in the olden days...{or in 'old fashioned, hey look kid just grit your teeth, doctoring'} the diagnostic thingee
that separated "undiferentiated spondylarthropy" and "b27+ spondylarthropy" from " A.S." was damage to the SI...
you couldn't get the 'AS' diagnosis without damage...NOWADAYS {unless your dr is one of those dinosauers)
you can rack up enough points without having damage...not to say that your immune system ain't working on it,
but it's not finished yet.

doctors only 'take away' your diagnosis when they get PO'd at you...out on the streets with no destination home.

that you've had repeated bouts of iritis is almost presumptive in itself.
good luck
aloha Ben

p.s. oh yeah, and all that welcome to the list stuff too

Never say never.

Have the same overworked constantly late hectic rheumy I first started with. Like a fluffy blonde gave me the spondywhat dx, took it away, and has been back to it and finally treating it aggressively although forgetting to monitor. Have always been of the proactive type anyway and feel comfortable with this overworked doc as long as the treatment is suiting my needs. Because of all the vison loss, sensibly he's the closest mileage to my doorstep.

Hence the miraculous internist who fills in the voids while taking home print offs from the nsd forum and roadback foundation for his afflicted brother who has AS.

Jayney may find this true in her circumstances too. Seems to be a process of getting in all the pricey tests like MRI's and bone scans to go along with the x-rays and mountains of blood tests that lead to a consideration of a female having AS even when there's damage already showing. The times are thankfully changing with the rheumys of the world finally accepting the increase in same. We march slowly forward.

Jayney Welcome,

I went through at least 20 years of constant pain (i.e. upper/lower back, neck, knees, feet, wrists etc.) and have had plenty of xrays with no significant damage anywhere. I've seen plenty of bone specialists and chiropractors over the years. It wasn't until a couple years ago that my family doctor sent me to a rheumy. After an exam and a bunch of blood tests (one visit) he determined I was B27+ and indeed was dxed with A.S. No xrays have been taken since. He's been treating me quite aggressively with some success.

Hope this helps answer your question.

Fred

Fred (happy birthday), My rheumy told me that now that AS has been Dx'd in me, they don't take routine x-rays to follow up development of the disease process-that's more for Dx-ing.

So Janey, were the x-rays specifically requested to be of the L.5-S.I. joints? Cause that's where Sacroiliitis is found. My x-rays of this area revealed that, but because I'm female, the docs viewing my CT Scans and MRI's came up with some different diseases I could have (no paradigm for AS in females possibly?) Because pelvic x-rays could have been of the hip joints and such...

just a note...a pelvic Xray gives a great three for the price of one view...includes hips and Si- all from one angle.

Hi Jayney

Ive been diagnosed for around 5 years now and although its been a year or two since my last x ray, at that point there had been no "signs" on the x-ray of AS, although they still appear to go with this diagnosis.

I've never had an MRI scan, so whether anything would show up on their or not I dont know.

One half of me wanted something to show up so I could say "yes, proof that theres something wrong!" but the other half didnt want anything showing up at all.

Daz

Hi everyone,
well, I am back from my first rhumie appointment: she was not happy with the radiographers report, because in her opinion there is clear indication of as involvement in the left si joint - when she showed me the x ray even I could see it. The radiographer was a student, but the report was written by someone else. Thanks to you guys, I went in there prepared and she knew that I knew what I was talking about - this meant that I wasnt spoken to like an ignoramus and it was a helpful consulation. She says she wont recommend no starch diet unless it has been 'placebo trialed' (bless... that wont stop me anyway!). I dont know why, but over the last two weeks my pain has increased to a level that is seriously affecting my life - waking at least 5 times a night in pain, waking in the morning in agony etc... all since my bloods confirmed everything ... strange! anyway, I was adamant that I would not take medication - famous last words, desperation has kicked in and now I have diclofenac. I will still continue to look at complementaries, supplements etc but at least I can hopefully start to sleep better ??
cant thank you all enough for your help and support, this evening I have my first swimming lesson - anything to make this thing stop taking over my life
Jayney x

jayney...

i was dxed at age 13, i'm now 40, my x-rays were basically normal until the last few years. my doc said because of that i probably wouldn't fuse (FYI). in my experience x-rays aren't taken that often. AS moves slowly enough that checking x-rays often isn't needed.

best of luck!

gentle hugs,
teddi

You're going through what I am right now almost exactly. I had an x-ray done first and then an MRI. If I understand it right, an MRI gives a better view of soft tissues. X-rays can show some soft tissue damage but they are primary used to view the bones. Both showed no damage.

I also am frustrated with trying to get a diagnosis. From wht I've read, the fusion commonly found with AS is actually caused by the pain from inflammation. This pain tells the body that it is injured and it tries to repair itself by creating new bone. This can cause fusion of the spine. So this is why I've changed my focus from trying to get a diagnosis to treating the pain. I'm almost certain I have AS. I have the gene and a lot of the symptoms. I don't need a doctor to confirm it. I just need to make sure I get the treatment I feel can prevent major problems in the future.