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

Hi Karen,

Just a quick detail on the symptoms/criteria of spondyloarthropathies, at the basis of them all, all the SpAs involve sacroiliitis.

A little quote from emedicine:
"The spondyloarthropathies are chronic inflammatory diseases that involve the sacroiliac joints, axial skeleton, and, to a lesser degree, peripheral joints and certain extra-articular organs, including the eyes, skin, and cardiovascular system. The etiology is unknown but involves the interaction of genetic and environmental factors"

I think folks really do care about each other here and don't intend to offer advice and personal experiences with disrespect but to offer real honest direct advice or opinion that may genuinely help steer someone in the right direction. I wonder if there is any way that you could come back and read this from an entirely different perspective? A complete 180.

What if challenging some of your beliefs isn't a sign of disrespect but the exact opposite? Imagine if you were me, wanting always to be polite wanting everyone to get the support they need most to figure out their pain, wanting to be direct without causing offence (as it seemingly has at times) and then having my politeish points, hours of researched links trying to help, seemingly dismissed each time. Do you see what I'm getting at? Respect goes both ways too, doesn't it. I'll admit it is a bit difficult for me to be given lessons on AS or meds after my 29 yrs with it, from someone without a diagnosis who has been reading up on it for but a fraction of the time I've been enduring it's wrath. But please know that I've not taken offence as I feel it's very unlikely you mean to be condescending but just mean to debate a possibility or differing take, and I've recognised you've been speaking from a position of emotional pain. I wish you might see the same thing in some of our replies here.

I really don't believe that anyone has sought to minimize your pain or frustrating journey Karen. I can see why some of this is upsetting to you but I really hope and wish you could change this perspective.. if we were sitting next to each other rather than reading print perhaps it would all be so much easier to convey. Or perhaps not.

Here, in kindness, I offer this bit. Not on any day in my 29 yrs with AS could I have hoped to do your exercise to realign the SIs as you described. Perhaps some others with AS could do it(?), but for me I was lucky if I could make it to sitting gently on the edge of a bed and slowly lowering myself to horizontal without torment. When I read these kinds of passages they don't strike me as someone afflicted with my same disease but obviously this is just my perspective and just one lone example. On Friday when a few of us kickers got together for dinner, I listened to Adam describe a painful time he had one evening when walking home in the rain. He shared this with us in about 3 simple sentences. I recognised his words as my own. I felt I knew exactly how he felt in that moment. It is a sense. I always say I'm not a doctor but I am a long term sufferer.

The kindest most respectful thing we can do is to give you our honest opinion.

Gosh I hope this comes across as I intend Karen and hope you sense and can read between these lines that what I write you is intended only to help. I'm not sure what the answers are for you, (Wendy's was easier to guess! ) I can only suggest you try to keep a broad view of the possibilities.

Take good care,
mig

Thank you Mel....hehehe.........oh sorry private joke there.......you have said better, in fewer words and more kindly, all that I intended to say.


Thank you.


only 29 years eh......huh. a mere beginner....lol

Hey now, only Kat is allowed to call me that Alan!

Yep a beginner then lol, and so are most in comparison to you... but we've all been through those beginning stages. It's easier for me to see the sentiment and thought process behind your words since I've been lucky enough to have met you in person once or twice and know you so well. You are one of the good guys... tho your silliness may not always translate to print!

x

He's pragmatic though...in a doctor type way...

Karen, please read this article it says that Systemic Tendonitis is often caused by Rheumatoid Arthritis....

http://www.ineed2know.org/tendonitis.htm

Mig,
Oh gosh, I wasn't offended at anything you said. I really do appreciate your research regarding this. If I've seemed not to, I sincerely apologize.

I'm not in the slightest offended by someone offering information which is different from the information I have. I'm always trying to collect more information to help both myself and others. It's possible to offer someone a contradictory viewpoint or piece of information and do so respectfully and your posts have always been respectful. In fact, in correcting misconceptions we are doing one another a favor and I appreciate that. I truly have always sensed that desire to help in your posts, mig. The posts I had issues with were not any of yours and I don't think that it was me who took exception to what you said about an unstable SI. Honestly, I can't say you convinced me, but nor did I think you were wrong or out of line in any way. In fact, I've given careful thought to what you have said and, in the end, I'm not sure what conclusion to come to. I'm hearing contradictory evidence and for now need to just keep the issue in mind.

Offering different information is never offensive to me. I'm a scientist and I'm always ready to examine new evidence. Disagreeing with a fact is never offensive to me. Impugning my personal medical choices IS offensive to me and none of your posts has come close to doing that, mig. I was addressing someone else with that comment.

I'm very hesitant to bring this up because I don't want to start something else, but the Amor diagnostic criteria for sponyloarthropathy do not require sacroilitis for a diagnosis:

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

Does that mean that one of us is right and the other is wrong? Absolutely not! It means that there are different definitions of spondyloarthropathy and we are working from different definitions and so coming to different conclusions. Will one of these definitions ultimately become the generally accepted medical one? I certainly hope so because it would help to end the confusion and help people to get the treatment they need. I don't know which one will ultimately become the "right" definition, but surely medicine will sort it out.

When I referred to minimizing another's pain, I didn't mean that anyone had done that to me... at least I don't think that's what I was referring to. This thread has gotten so convoluted it's hard to remember where I was and I don't feel like going back over it all. I think I was trying to let someone else know that I didn't think that what they went through was trivial.

You are right; if we were sitting next to one another it would be so much more clear what we were trying to say and what we were referring to.

Like I said earlier, when I follow stories like yours on kickas, I so wish that there was a treatment or a cure so that you didn't have so many challenges to face. It's not fair that some people have so much pain and, quite honestly, I sometimes wonder if God knows what he is doing in running this world of ours.

Karen

Thanks, Michelle, I'll give it a read.

Karen

Hey Everybody:

As someone who has kept out of this, but doesn't like seeing this conflict develop

I certainly don't have the degree of physical ailments that a lot of you do, don't have the fusing, don't have the lack of movement, but I sure have empathy for those of you who do

I was undiagnosed for 20 years, and can tell you that not knowing is its own brand of hell

It makes you mad at yourself for not finding the answers, even when you are doing productive work at your job, doing the things that society rewards you for, you can't help thinking that you should just stop all that and devote all your resources to looking for an answer. So that you won't look back on your life later, and wish you had tried harder, and always wonder. So of course, if you do make that decision to dedicate yourself to that, and then find that the medical world still fails to give you what you need, the frustration just compounds, and can easily turn into panic-

Now I have a little piece of paper that says I have Reactive Arthritis, that piece of paper hasn't done anything to decrease the pain, but it does gives me a few more places to explore, I could probably try Remicade if I decide to. I am very unsure if the diagnosis is correct, though, because I don't have the types of digestive disorders that seem to typically go with that

Right now I'm going to explore something I've read about, pelvic floor disorder (levator syndrome)

I sure hope that if I were to be lucky enough to find out that what I suffer from was not AS-related, and if it turns out I was mis-diagnosed, that I wouldn't be any less welcome on this forum, though, and could stay here and talk about it with you all, I'd hope I wouldn't have to leave and look for a KickLevator board...

Hey Dow, well, when you put 7,000 people together, you can expect a little rift from time to time but over-all, I think we do pretty well... Some issues need to be addressed from time to time, but you need to understand that we've all been down the 100-mile road with no diagnosis at the end experience and those of us who have finally gotten Dxes don't want to start going backwards and rethinking our diagnosis'...

Michelle,

I agree that if a patient has a lack of stiffness in that region, one may not be inclined to give AS a thought. I can also agree that AS likely does not cause SI joint instability. I would venture to guess that SI joint instability could have many possible causes. However, I'm not sure that it is valid to assert that what is causing AS isn't causing any SI joint instability. They may be part of the same disease process, they may not. I really don't know.

Could you please provide citations to support absolute statements such as "...there's an absence of stiffness in that region (SI region) because that is where AS symptoms begin..."? I can't say that I've ever read information that supports all AS symptoms originating in the SI region.

Also, I'm not sure that stiffness equals immobility. Fusion may eventually cause immobility, but just because stiffness of a joint exists, regardless of it's location in the body, doesn't mean that it's rendered immobile.