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.