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

I appreciate everyone's replies. I wanted to get an idea of what others have experienced. The rheumy told me that she would expect to see evidence on an MRI within a year of disease onset, certainly within three years. It's significant to me that nothing shows on my MRIs after either 14 or 4 years, depending on how you count.

Still, when I look at the list of ligaments and tendons that are affected in people with Undif Spondy, I see all of my hot spots.

BUT, I get worse with exercise and have no morning stiffness or soreness.

Trudi, as I understand it, just having a sore SI doesn't qualify as sacroilitis. In the early stages an MRI and in the later stages an X ray should show some specific changes, including erosions of the bone if there is true sacroilitis. A pulled ligament could also cause SI pain, but wouldn't be indicative of AS. It's sort of like saying a sore throat and a fever don't necessarily indicate swine flu. My SI MRI doesn't show those erosive changes.

Nevertheless, I have to agree with you that what you have certainly looks like AS and I can't believe those doctors aren't diagnosing and treating you appropriately.

mc, the technique for realigning the SI depends on how your SI is misaligned so I can't give you a simple answer. A good PT can realign your SI for you and then teach you do to it for yourself.

When I'm misaligned, it's always my right side tipped forward. To realign, I lie on my stomach on the bed with my right side along the side of the bed. I take my right leg and bring it forward until my right foot is flat on the floor under my shoulder and my right knee is bent 90 degrees. I bend my left knee 90 degrees so that my left foot is up in the air. Then I push down into the floor with my right foot and push down into the bed with my left knee. I do that six times for a count of six each time. It sounds quite complex, but once I figured it out I found it rather simple.

I've used other methods besides this one, but for me this give the best results.

Karen

realigning the SI? things you can try.

for me, it depends time to time and sometimes i can get it back in and sometimes it takes a few days.

a few simple things to try:

stand in door way, back against on side of the frame, bring one foot up (raise leg about 90 degrees) and push it into the doorframe on the opposite side from where you are standing, repeat with other foot.

sit on chair, bed, where ever, and squeeze something like a pillow, book, etc, between your knees. when i'm loose and / or a bit out, i can hear it crack back into place.

laying down on floor on back, knees up off floor, again put something between knees so that knees are about shoulder width apart and squeeze.

there are more complicated things to try as well. you can push your knees out into someone else's hands while laying on back, you can put your legs straight out while laying on floor and push into someone else's hands or into the wall.

then there are times when i will sit in the recliner and put myself in odd positions and then push against the chair, either pushing my back into the back or pushing my legs or feet into the seat, while at various angles until i feel something give and feel better.

i also have this yoga move i do when the misalignment is further down, where i stand against a wall and end up like the letter T, with one foot on floor, and the other leg out 90 degrees, i start off facing in same direction as foot, then turn facing away from the wall. that will help crack something lower down, where buttocks ends and leg begins.

all of this is basically just different isometric exercises.

as karen said, a good PT can teach you how to do these things.

sue

karen,

as i read all of these replies, i think what i'm left with is that for some people its fairly quick and for others its a long time, so just because you haven't seen anything yet, doesn't really indicate that it is or isn't, i know i'm not ruling anything in or out yet, without a dx, it just means they don't know yet.

and though my tendon/ligament problems which are like yours seem to completely baffle all the doctors i've seen (their words, not mine....ok, they don't use the word baffle, but they do say, "i have no idea why ......") but the thing i find most striking is the only people i've ever met with severe tendon / ligament issues (-itises, pulls, tears, ruptures (thank goodness that last one hasn't happened yet)) are people with AS and people like us. i've never come across another disease (except for EDS and i'm not bendy) besides AS that causes these things and if AS can cause these things, well, then, i guess that's why i came here to begin with.......... THAT and the SI combined........


some of my doctors are saying, "not enough evidence yet to determine.......", and others say "at least you don't have anything bad like AS, just some discomfort......", and others say, "you have an autoimmune arthritis", and the list goes on. i think the truth is, no body really knows. of course that doesn't really help us much, does it? so i'm back to the "try to treat the symptoms as best i can", keep gathering evidence, and keep talking to the doctors about programs designed to uncover the unknown.

sue

Hi Karen,

I was dxed in 2007 mainly due to my symptoms.

I'm still confused by the different Doctors interpretations.

Before being dxed, the first specialist couldn't find anything, the second told me it was part of aging, live with it, the third xrayed my hips and said they would need replacing soon and the fourth took an xray of my hips and said that it was AS - this was after my back was severly siezing up in the mornings (a GP told me to have hot showers to fix it). The last Rhuemy did a nuclear scan which showed inflammation or activity.

The last Rheumy handed me over to the expert in WA who tells me that there is little physical evidence, but that the symptoms point to AS and fibro.

Lots of conflicting views....

I'm now officially (at 49) retired.

James

I have a question...Sue, is it you that has the unstable pelvic/SI area? If memory serves me right Karen does too?...it seems like there was a thread awhile back and most of the members that responded, reported the exact opposite...if that's so, that may be an important clue....

Both Sue and I have an unstable SI.

Early in the inflammatory process there is joint space widening and I'm guessing in this stage the SI could be unstable. As inflammation progresses, the joint space narrows as it is filled in and then I'd guess the joint would be stiff.

Karen

Well, here's what I was thinking about the issue with unstable SI joints, my first symptom was pain, stiffness and a decreased range of motion in the lumbar area, I definitely didn't have instability in any part of my lumbar region...maybe some people present differently, I don't know but I don't think that I've ever read that SI joint instability was a symptom of AS, I could be wrong though, either way, I'm just trying to help you figure this out....

Here's an article I found on the early symptoms of AS.....

What Are the Early Symptoms of Ankylosing Spondylitis?
The most common early symptoms of spondylitis include:

Pain and stiffness. Constant pain and stiffness in the low back, buttocks and hips that continue for more than three months. Spondylitis often starts around the sacroiliac joints, where the sacrum (the lowest major part of the spine) joins the ilium bone of the pelvis in the lower back region.
Bony fusion. Ankylosing spondylitis can cause an overgrowth of the bones, which may lead to abnormal joining of bones, called "bony fusion." Fusion affecting bones of the neck, back or hips may impair a person's ability to perform routine activities. Fusion of the ribs to the spine or breastbone may limit a person's ability to expand his or her chest when taking a deep breath.
Pain in ligaments and tendons. Spondylitis also may affect some of the ligaments and tendons that attach to bones. Tendonitis (inflammation of the tendon) may cause pain and stiffness in the area behind or beneath the heel, such as the Achilles tendon at the back of the ankle

Interesting.

My SI and butt pain is more intermittent than constant.

I'm not particularly stiff, except for my neck.

No signs of bony fusion.

Tenidinitis? Oh yeah!

Karen

you know, i've read so many different contradictory things, heard so many contradictory things (from doctors, etc), and seen so many variations on the theme here, that i'm still not ruling anything in or out. i think the undiff spondy category was designed for people that don't exactly present initially in the classic sense. and honestly, if they could just give me a pill that made all the symptoms go away, i really wouldn't care what they called it. but, since they are doing an abysmal job at that...........

oh, my head hurts now, so i will stop.

sue