Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group No Radiologic Evidence

In 1995, I developed sciatica. It behaved like mechanical back pain, in the sense that it was worse with activity and better in the morning.

Starting in 2005, I began developing enthesitis/tendinitis at one location after another, always bilateral. I've had the tendinitis-like stuff in about 30 different places by now; some have healed, but most remain mildly problematic. They are irritated by activity and don't feel worse in the morning. I have at times had pain in my SI, but lately only when it is misaligned. It misaligns easily, but if I realign the SI it quits hurting.

In the last year, I've had an MRI of the SI with contrast, and MRIs of the neck and lumbar spine, a bone scan, and X rays of the ankles and feet. None showed any sign of inflammatory arthritis, but there were some signs of osteoarthritis in the neck.

I'm HLA-B27 positive. At last check, my ANA was elevated, but it has been normal in the past. CRP and sed rates have always been normal.

It's been 14 years since I first had back issues and 4 years since I first began having peripheral issues. The rheumy at Mayo said that if I don't have any radiological evidence by this point, then I almost certainly don't have an inflammatory process like AS going on.

I repsect what the rheumy said and the education and clinical experience behind it, but she didn't entirely convince me. I'm not saying she is wrong. She may very well be right. In fact, I hope she is. I'm just saying there are still niggling doubts and concerns in my mind.

How long did other people take to show radiological evidence?

Karen

I first "injured my back" in mid-1998. I went to an orthopedic doctor who stated that my problem was a sprain and that I acutely strained a ligament in lumbar region. He sent me for PT which did very little for me.

I had my first x-rays ordered by a different orthopedic doctor in early 2000. He suspected AS based on SI joint erosion and a positive result from my HLA-B27 gene test.

Hi Karen, I was in a bad car wreck in '98 and no radiographic evidence showed on my x-rays or MRIs. The only thing they saw was where my back was broken, I was under the care of an ortho for the next few years, I went to him in 2000 complaining that my back pain was increasing in intensity and the x-rays showed some erosion in the SI joints, so he Dxed me with sacroilitis and started me on steroid injections in the SIJs, in 2002, he recommended surgery to fuse my SIJs because they'd gotten so bad, he actually scheduled the surgery and I backed out...so for me, at 2 years from the onset of symptoms there was radiographic evidence but I wasn't Dxed for another 5 years for a total of 7 years...

Karen, I started having back pain in my teens. First huge (six month) bout with sciatica when I was 24. First recognizable in retrospect full flare (no radiological changes, so no diagnosis) when I was +/- 28. I was 38 when I was diagnosed because of changes showing on an x-ray.

So, all told? At the very least ... say, 15 years? Give or take.

I truly hope you don't have AS, but by the same token I don't know which is worse. All the pain and no diagnosis, or AS. Six of one, half dozen of the other, I suppose. Pain is pain and it sucks.

Love and hugs,

Hi Karen,

I had radiologic evidence of SI joint inflammation and cervical disk disease when I was in my early twenties. They said likely spondy, but I didn't have health insurance, so I went for 14 years without addressing it (but WITH continued pain, fatigue, and gut issues that I have since learned are also symptoms). I recently went back to a rheumatologist (a year ago?) and there is more radiologic evidence of SI joint erosion (both sides now) and squaring of my thoracic vertebrae. SO, for me, SI joints showed first.

Good luck!!

I had a normal SI joint x-ray after 7 years. I have read that it can take up to 10 years before there is any radiographic evidence. You mentioned that your original pain was more mechanical. Maybe your AS started in 2005. I am not sure why the doctor said that. I certainly can't debate her on the topic. I thought that if there isn't any evidence of structural changes but you still had the symptoms that it was undiff. spondy. as opposed to AS. That may not be AS but it is still inflammatory arthritis. The fact that you don't feel better with activity and feel fine in the morning is a red flag. You may have not have AS. What peripheral joints are affected? Are they the more common AS joints?

I just keep remembering that WOMEN typically are SLOWER in radiological changes. And the last article I read said that Sacrolitis and spondylitis (inflammation of spine) ARE considered ankylosing spondylitis. The diagnosis has nothing to do with seeing changes on xray or not.

I'm sorry, but even if I have a slight sniffle and cough means i have a cold, even though it is not in it's full blown state yet. And pre-labor pains are still considered labor pains. Why can't pre-AS still be AS? no... these doctors say it's all in your head ... or it's something new & unusual that they don't know what it is.

C-mon.. if it quacks like a duck.... or peepes like a duckling...

Hi Karen

I had evidence via CAT scan after five years, then after twelve years a plain X-ray of my spine showed the new bone growth. I just had an Mri and it showed all kinds of prolems. This is after having A/S for twenty years. I must scan my MRI and show the results .


Janet

My neice is a physio and she was tellig me 90% of people who have SI joint pain do not have A/S . I was quite surprised too hear that.

Hey Karen,
I was diagnosed with sciatica when i was around 25, but no xrays or anything done and it was no big deal, exercises and sleeping with pillow under knees and it went away. never any problems except with pregnancies.
Fast forward to 38, started feeling really sick with peripheral joint pain and tendon problems. xrays a year later showed something on my si joint that made my rheum suspect spondylitis despite neg. gene test and no low back. then the pain started, had mri showed unilateral sacroiliitis. The tendon issues seem like a big clue.

If i go by when i really started feeling like crap- a little over a year for evidence, but i'm guessing the sciatica at 25 means somethings been brewing the past 15 years.

Gotta ask how do you realign your SI? I bent down to help my 3 year old yesterday and something happened - felt like a warm jab then hot water balloon bursting in me, the pain's left side (not where mri showed problem) si region radiates around hip and i can't bend over now. been doing ice and heat.
thanks mc

Hi Karen,
I didn't start having swelling in my joints unti about the third year of on /off SI pain. Then my wrists, and toes became swolen and permanet damage occurred quite quickly. I know never have a swollen joint however Ihave taekn Phenylbutazone for twenty years.

Janet