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

Some interesting reading here. It seems that my post has caused some offence. That was not my intention.

Karen I am bemused as to why you are offended by my response to another. I am disappointed that you and I seem to be at war with each one another.

You do however, often ask for advice, seeking comment and information from posters to this site, it seems to me that as others too have said, that you have received plentiful feedback and disregarded it.

You have seen goodness knows how many doctors, none of whom have given you a diagnosis, or if they have, you have disagreed with it. You speak about drugs prescribed that you decide not to take because you have doubts about the doctors knowledge or abilities and yet are delighted to ask and be guided in your drug taking by all we none qualified on KA.

You have apparently seen 14 or was it 19 doctors recently at your Mayo centre of excellence and still disregard their views or you disagree with them.

You as far as I can see exhibit no signs of AS, you seem to understand nothing of the realities of AS. You talk of diagnosis criteria, of diagreeing with doctors because you know better how to diagnose AS.

I have had AS for 45 years, let me tell you a little of it.


Searing pain unremitting, remoseless moment by moment, hour by hour, day by day, never ending, always getting worse, no hope of freedom from it for a moment. Then the fusion from hip to neck, the entire ribcage a fused block, knees and hips that refuse to work, a neck that cannot bend in a perpetual state of agony, oh and just as a side order the deformity pops in to say hello. Bent like a walking stick, eyes glued to the floor for 20 years, then the internal damage caused by the deformity and in the midst of all this the pain continuies unabated.


Wow then a surgeon comes along and performs miracles and straightens me up, gives me a reason to keep going, gives me some life back. Oh and then in the happiness of this fabulous chance at life the pain continues and the fusion continues and here I am on the bend yet again.....

I sat with my doctor not to long ago and complained that i was as bad today as i was 45 years ago. Well of course you are said he, you have Ankylosing Spondylitis.


Karen, Sue, if you can claim to endure any of the above, then you may have AS. Silly talk of radiographs and bloodwork terrible doctors and the rest is of little value.

If you have real AS you will know it. It refuses to be ignored. There are many on here who do, these are the ones whose advice you regularly disregard and challenge.

Karen you had a sort of a diagnosis you say at your recent visit to Mayo, I think something like

"You really want this diagnosis don't you"

I hope in this case that the doctor was in error, for if you truly knew AS for the monster that it is, you would not seek to be gifted with such a diagnosis.

As for support on this site, the family and so on, well I am no hero, never brave at saying or hearing that that I may find discomforting but if we all on here are expected to be a simpering, sympathetic patronising bunch, then we would do nought but dis-service to the members. SOmetimes a dose of truth, hurtful or not is better and fairer.

No one has ever diagnosed you with AS, you show no AS symptoms. The lack of a diagnosis from so many different doctors seems to me to be a diagnosis in itself.


Be jolly pleased with the lack of AS


Many of us would be thrilled not to have the blessed thing.


I write this from honest belief and not as an attempt to offend or score points, that is not my nature, I wish you well.

That's exactly how I feel!! One member here challenged the extent of my AS illness by telling me that I shouldn't be physically able to travel several hours to see my doctor! Here's the big kick of it all....this person has not even been diagnosed with AS or anything else for that matter...I found this to be very offensive, to judge me and my AS....disrespectful! And you are so right Alan, if someone truly has AS, it will march on, with or without a diagnosis and make every aspect of your life a living hell!!... if they only knew what we go through, I don't know why anyone would want this cursed disease either...I'm not as bad off as you are yet but the hell that I go through....well you know...and to have this person say that to me....I'm already so angry that I've been cursed with this wretched disease and that my children are having similar problems...it just hit me all wrong and at a bad time....

Alan,
I truly cannot begin to imagine the horror of what you have been through in your many years of AS. What you have is clearly a particularly difficult and painful form of AS. It breaks my heart to hear of anyone suffering so much for so long and I wish with all of my strength that medical science would come up with a cure or a treatment which would help you and everyone else with AS.

But I will repeat what I said in my earlier post:

"In talking about symptoms of AS, it's important to remember, that the family of spondyloarthopathies includes several different diseases, each with unique diagnostic criteria and some with more than one set of possible diagnostic criteria. This situation can create a great deal of confusion even among qualified and competent medical professionals because even the medical profession is not in full agreement about how to diagnose AS and related autoimmune disease. That statement is not meant to denigrate the medical profession. Medicine is of its very nature an inexact and still evolving science and therefore does not have everything sorted out and neatly categorized. Doctors are doing their best to develop reliable diagnostic criteria, but they aren't there yet. Moreover, within the diagnostic criteria for a given disease, there is a range of symptoms which meet those criteria. Because of that, each individual's manifestation of a disease will be unique to that person. Toss is what Wendy said about the overlap between autoimmune diseases and you have a challeging situation indeed, both for doctors and patients."

The fact that I do not have symptoms like yours either in quality or quantity does not in and of itself mean that I don't have a form of spondyloarthropathy.


I do not care to discuss any further with you my relationship with the medical profession as you seem unable to hear what I am saying and you persist in making disparaging remarks about what I have done. Clearly our philosophies of medical care are different. I promise to treat your approach to medicine respectfully and ask that you do the same for me.

I am finished with this discussion.

kare

All the best to you, Michelle. I appreciate the input.



Karen

Yes, I felt that this would be your response.

I wish you well.

Thanks Karen....big hugs....

I'm going down to DEFCON 3 from DEFCON 2. However, when you reply to my post with a response that is not directed to anyone else, what am I to think?

Yes, I made that statement. However, please bear in mind the wording "at all". This was to indicate that if a doctor were to completely and absolutely disregard this symptom/condition and the possibility, depending on other diagnostic factors, that the patient might be suffering form AS, that doctor may want to reconsider.

I don't think I discounted anyone or their symptoms. Not once did I say that stiffness and loss of mobility is not a symptom of early AS. I, too, had stiffness and loss of mobility during the onset of my disease. However, the PT noted the inability of my pelvis to hold it's correction and remain aligned. However, I was not aware that this information may have been useful. It may have been completely irrelevant. However in light of others that remain without a firm diagnosis, whatever their condition/disease may be, it may be helpful in helping them obtain a some sort of diagnosis (not necessarily AS). I don't know if this would have been useful in my case or not. That really doesn't matter now.

Scientifically knowledgeable and intelligent folks like Karen and Sue may be well aware that this information might be useful to the doctor. I, an individual in the "professional" business world at the time, only a few years out of school, and somehow still attempting to cope with major past and present health ailments, relied completely on my doctors. I also completely relied on them to ask the right questions to figure out what was wrong with me. That's why I consulted with them from the get-go.

I never, ever attempted to discredit the validity of anyone's diagnosis. Please don't imply that this is what I was attempting to do.

No harm, no foul.

Jay...just a friendly discussion here, not meant to offend but in all reality, if a patient presents with joint pain, fatigue, and an unstable lumbar/SI, they won't be looking for AS...just the facts sir....

Granted, I don't see an unstable lumbar/SI listed as a most common symptom or other symptom, but that doesn't mean that some may not experience it. Joint pain and fatigue are included per this citation:

Ankylosing Spondylitis - SAA

While I agree that some people may have instability in this region, I don't agree that it's caused by AS....it would be a separate issue, I would find it odd though that there's an absence of stiffness in that region because that is where AS symptoms usually begin, in the SI Joints (sacroilitis is the hallmark symptom of early AS) so if there was an absence of stiffness and immobility in the lumbar region, AS would be ruled out until there is radiographic evidence to support a DX of AS....