Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Diagnoses

Hi Wendy, my thought - like you said it could be many things

Warning Signs or Early Tendonitis Symptoms
•Restricted movement without pain
•Stiffness and swelling in the affected area
•Usually severe pain at night and in the morning
•Pain during and after movements of the affected area

Hugs
Gerri

Hi Michelle, cripes it is 21 years since we spoke, how are you?

I am as lovely as ever!!!

And I am not a goof.........so there


Wendy yes my Tonsils were very warm from the slicing and chopping, it didnt help that the blood sucking machine became entangled with a sock, thus forcing me to swallow my own self, yes I was a bit hot under the collar...

Noooooooo Gerri, it is a trick question you see, what Wendy is aiming for that which is my second and accurate guess...........Hypothermia....oh yes the points are mine...!

Personally I thought the answer was rigamortis.

I sure hope not...
Life after death sounds a lot better than pain after death! lol

I don't know Kevin, I think it's also dangerous for people with firm diagnoses, with symptoms that present themselves clearly through imaging, blood work, etc, to give advice to those who do not.

I would want to avoid a discussion about which type of sceario is worse, those with absolute DX's or those without, but I can tell you that not knowing is its own particular brand of hell

I don't want to bore anybody with my whole history here, but I WILL say that my own research over the 24 last years, since the day that my right SI joint started hurting big time, has been key to my progress, and I would NOT want to take myself off my team of medical advisors.

And add that there were a bunch of middle years in there, when doctors were just kind of shrugging their shoulders, suggesting that if they didn't see any hard medical evidence, that there wasn't anything there.

So I just slogged through it, "lived life" or as Wendy put it, "seized the day" as best I could, literally limped along, kept on working, just kind of hoping that things would get better on their own, when I was with other people, would just kind of pretend that I was fine.

Then one day I got in my car, the pain hit me so hard as I sat in the seat, and I realized NO, I CANNOT accept this.

Was I angry at those doctors who likely missed key symptoms, maybe didn't order the right test, or maybe just not all that bright to begin with?

No, I was angry at MYSELF, for spending the last ten years or so, working on TV shows, writing music, etc, because maybe, just maybe, if I had concentrated on following the remaining ideas and looking under the rocks that hadn't been uncovered, maybe I wouldn't be in so much pain today.

And maybe if I do some research today, I may or may not find any answers, but at least I won't be angry at myself for not trying, 20 more years from today, if I reach 74.

For some of us, exploring some whackadoodle theory, like noticing that our pain gets worse on Tuesdays, but better on Wednesdays, and we might post charts, graphs, etc, to support that, and we seem to be close to concluding that we have the dreaded disease of Tuesdayitis? Scoff and laugh you might, but it might be our best theory at the moment..

So am I suggesting a little more understanding, a little more patience, a little wider berth from those here who have clear DX's to those who don't?

Yes, I am.

I hear you, dow

Yes Dow in case you hadn't noticed I went 23 years without diagnosis so I do know what its like and I went through very severe pain when at times I had to be carried. And its far less dangerous for people with a diagnosis to try and help people.I would never diagnose anyone's condition I'm not qualified to do so.But I also think it is not good to do self diagnoses there are too many conditions that can have similar symptoms and to argue with Doctors that you have one thing when you could have another is not a good idea.You cant blame Doctors all the time AS can be difficult to diagnose as can RA.
And don't tell me to be understanding and patient my knowledge is from pain and suffering AS for a long time and I have already said I understand and sympathy with people who are not diagnosed and know the frustration they feel.All I have said is its not good to get to the point of obsession were your life is spent trying to find an answer in books and on the net.Life is what you make it and very short as long as your getting treatment and its helping have the best life you can.
And to say to have a wider birth between those who have a diagnoses and those that don't is the most ridiculous comment I've ever heard.

Oh dear, cocked up my reply there...

I was going to continue...

I can remember being in "hell" as you put it, when I had no DX. I had symptoms which were crippling me and taking over my ability to function in my job and personal life, and yet no-one knew what was wrong with me.

I could not understand how my symptoms could be so extreme and agonising with no explanation being offered to me?

How can you get better if you do not know what is wrong with you and what will either help you or make you worse.

It's very frightening and you feel very vulnerable and out of control.

But even with a DX it can still be a minefield.

My AS went into remission for a long time and when it hit back I had great trouble recognising what the problem was. So often, I either have symptoms and don't realise it's my AS or I put things down to AS and it's not that.

It's all very confusing.

The main feeling I have is if anyone needs support we should try to give it.

Hi Tink,

You've raised a good point that I'm hoping others will clarify.

What do we mean by support?

Does support mean that asking questions about statements that are posted on KA is not ok? Is it unsupportive to question assumptions or misinformation? Is it unsupportive to suggest other ways of looking at things?

Or is support supposed to be unqualified belief in everything written in KA?

Is it ok to disagree with people?

Does questioning someone's diagnosis actually mean you are not supportive of that person? Or could it be seen as helpful to suggest other ways of thinking?

Is support just "there, there" or can it be intelligent debate?

Just wondering how others perceive this...