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

Hey Karen, it makes me so mad to think if we actually do everything we can to help progression of this disease and we're lucky enough to have slow progression to begin with, it actually hinders us in getting a diagnosis and treatment. So counterintuitive. Grrr. I may not always respond these days, but I always read your posts... and am always hoping for progress where you're concerned!

If the information helps, when I went to PT for the diagnosed lumbar sprain, the therapist always told me my hip/pelvic area was out of alignment. She showed me how to try and realign myself. However, as much as tried, she would always have to re-do it at my next appointment (and I was going to PT two to three times a week).

My personal experience leads me to believe that whoever states that a "floating" pelvic area is not at all indicative of AS should really reconsider. Or maybe I should reconsider my disease??? Maybe I don't have AS! Whoo-hoo! But then, why do I have this fused neck, this inflammation, the mobility of a man at least twice my age, and all these other goodies that make life so memorable?

thanks jay,

sue

Always of interest to me that so many people don't believe a word that any doctor tells them but sieze gratefully upon a smidgin of support dispensed by others, less qualified to give an opinion at all.

Not to offend those caring practitioners but they aren't rheumatologists!

Mind you I was chatting to my baker the other day he was convinced I had no AS, b u g g e r those dammned rheumatologists!!

I couldn't agree with you more Alan.... Soon they'll be trying to change the diagnostic protocol, tailoring it to fit symptoms....

so what would you believe if you were to get a whole range of different answers, many of them contradictory? which doctor would you believe if they were all saying different things? what would you do with that information? and what would you do if most of the doctors simply said "sorry, i can't help you", "sorry, i really don't know"? would you just stop looking for an answer? would you just stop trying to get help? or would you continue searching until someone knew what was going on and someone could help you, especially when most of your doctors are encouraging you to do just this?

sue

Alan, I'm glad that you have a diagnosis and an excellent doctor to work with, but please bear in mind that not everyone does.

Some of us are still lost in the medical system, without a diagnosis and without appropriate treatment. Because of that, it's important for those of us who are undiagnosed to remember that there is a wide variety of possibilities regarding our diagnoses and treatments and no doctor has answers for us.

Kickas exists to provide information and support for those who have AS and those who might possibly have AS. Everyone who comes here deserves to be treated with respect.

Karen

Actually, I tried that once. More than once actually. Let's see. I spent a total of three weeks in the hospital. During the first nine days, poisons were pumped into my body intravenously to make the disease, or was that the symptoms, go away. Then we were told that surgery would cure the problem. So they ripped out body parts. Wait, the experience wouldn't be complete without a post-surgical infection that nearly killed me. All this after orally ingesting poisons for six weeks that were supposed to make me better. Hmmmm...there were multiple medical "professionals" involved in said disaster, therefore maybe this helps to clarify why I don't believe the load of [**BLEEP**] peddled by most doctors.

I don't know. Perhaps it is a difference in culture where many of us have learned, and are encouraged, to question supposed figures of authority.

I'd also tell that baker that the bread he sells is stale.

I believe Jay has a valid point; perhaps there is a philosophical difference in our approaches to medicine, possibly based on cultural differences.

Some people prefer a collaborative approach with the doctor and patient both contributing to gathering information and making decisions.

Others prefer a more authoritarian approach, where the doctor provides information and makes decisions which the patient is expected to follow.

Both are appropriate and acceptable approaches. It is up to each one of us to decide on the terms of our relationship with the medical profession and then live the with the consequences of that decision. Sometimes we may disagree with one another, but it is preferable that we state the reasons for our disagreement respectfully, remembering the difference between disagreeing with an idea and criticizing the motivation or character of the person who has that idea.

It is also important to remember that every one of us here at kickas is hurting either physically or emotionally or both. Because of that, it is all the more important that we be gentle with one another so that we don't add to the pain another person is feeling.

On a personal note, Alan, you have no idea what I have gone through in the last two months. We are a family of modest means, but I took a week off of work, and, at my own expense, flew to a city 800 miles away where I paid for housing for a week for myself and a friend who accompanied me. During that week, I had 19 medical appointments. If you read my Mayo Blog, you would know that I spoke very highly of the medical care I received there. Despite all of my efforts, I came home with nothing more than a new pair of orthotics. No one there knew what to do with me.

Do you have any idea how frustrating and bitterly disappointing that was for me? Moreover, I have been under incredible personal stress in the last two months, dealing with things which I am not free to talk about in a public forum.

Alan, I'm hurting and your thoughtless comments to my last two posts have added to my hurt. I need a place where I can post my questions and concerns and be safe from ridicule. Please be aware that the words you post are read by real people with real lives and your words have consequences.

Karen

Hi Jay, this is a concern that I share, and although I obviously don't know your history, my guess from the little bit that you've written is that any PT diagnosing you with a 'lumbar sprain' that was 'out of alignment', clearly must have had it wrong, it seems to me. The problem wasn't that your SI joints were 'out of alignment' and no amount of realigning was likely ever going to help the situation, not when all along the problem you were suffering was AS attacking your SIJ! I am sorry for your added hospital nightmare. That sounds like a horrible time you went through.


Like others here, I am grateful for the help I've received from physiotherapists too but recognise that mine is there to help to improve my range of motion and mobility, not to diagnose but to assess my limitations and offer ways to help me.

It would certainly be awfully confusing if a PT was saying something contrary to what a rheumatologist was saying, and especially if trying to provide useful guidance in absence of a diagnosis... I think the point however, is that their level of training doesn't approach what a rheumatologist specializing in AS has behind them and perhaps should be taken with a grain of salt?

Sue, I think being lost without a diagnosis would be incredibly difficult to deal with in so many ways. I only spent 2 & 1/2 yrs before a dx and I remember that feeling of not knowing too well. It was not fun. If I'd never been diagnosed and was still suffering as I was back then, I can guarantee you I'd still be looking..!

And Karen, yes, KickAS does exist to provide info and support for folks whether they are diagnosed or not - absolutely!! There is a wealth of info here.

Like Michelle said, instability of the SIs is not one of the symptoms of AS and could be an important clue. In fact, I remember that last discussion mentioned and asked this very question of my rheumatologist and two physiotherapists (who work alongside her in an AS clinic) just days afterwards as I just happened to have an appointment. All three confirmed that the SIs get stiff due to inflammation that surrounds and tries to protect a joint under attack and range of motion becomes more limited. That's one purpose of inflammation as an immune response - limiting movement to prevent further injury. In the process of erosion, as joint space widening occurs and bone remodelling begins, the sensation and experience is primarily one of stiffness and pain. That's my experience anyway and I believe it is a fairly universal one with AS. The SIJs appear blurred on xray. So, my thought process would be that either a PT has incorrectly 'labelled' it as instability when that isn't what is actually happening underneath, OR, it isn't AS at the root. From my view, it's doubtful that it's both AS and instability as these two don't jive... (with my usual disclaimer of, I am just a patient though, so another grain of salt. )

Because KA does have a bunch of folks, both with a dx and without, the beauty of gaining multiple viewpoints may also make it more difficult to sort through, as symptoms may seem even more wildly varied than they are and thus more complex to sort through, I fear.

Anyway, I hope this is helpful somehow!
mig