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

You're not alone Lisa, I must admit, I thought the same thing...

Im sorry Lisa your name should be there a slip on my part I will make it up to you.

Hi everybody - This is my first time here because I have no dx of AS altho most of its symptoms. I'm on a fact-finding mission because most of my docs have outruled AS based on a negative HLA-B27. I read the first post and thought... oh, how ironic. All of you bring up good points but sometimes I feel that those who have a firm dx have the advantage. Disease is stressful enough and then add the stress of not really knowing, makes me so [*bleep*] mad sometimes. Is it that you really won't know until your spine starts to fuse?

I have been thinking about this a lot. I fear my post will become a long rant but shall try to keep it to the point.

I see no problem with questioning a diagnosis or symptoms for that matter as long as it is an honest question and not an undrhanded attack on the original poster. For example you question what the symptoms could mean/caused from rather than question if the poster has the symptoms in the first place or severity of those symptoms.

I must agree with Dow, I don't like the characterizing someone else's illness as "moderate" "severe' or "slight".
While those with AS who have fusing may be concidered by the medical community as having a more servere form of AS they also believe there is less pain once fusion has taken place.

I question what symptoms classify you as servere/moderate/slight.
Person (A) has AS with fusion but no heart damage.
Person (B) has AS with NO fusion but the heart has been damaged.
Person (C) has no definative dx, Drescribes servere pain in the SI's and back. Limmited range of movement. And can barely take care of simple duties.

Now even as I write this I couldn't tell you who is the most severe. And I don't feel it is right for us to even try.
We should just accept it for what it is to the individual at the time.

Support mmm I guess again the definition changes with the individual.
Going back to my teenage years now to try and explain how I feel.
I remember breaking up with my First serious boyfriend.
Mum told me all the things like, you will get over it, you will meet someone wonderful one day and you will forget about "bob, Fred, whoever" He was only your first boyfriend and its not the end of the world.
Now this was mums way of trying to show support, but it only made me feel like she wasn't supporting me at all.

All I wanted was for her to give me a hug and accknowledge that it felt like it was the end of the world to me. I just wanted her to say it sucks big time and you have every right to cry.

I guess it is the same here for me. When I am having a realy crap day I just want someone to say I feel for you it sucks doesn't it.

Kevin, you know I think you are great and you have been a great support since I have came to kickas. However when I read your post, it made me feel like I was less of a person. Whilst I understand you are being encouraging and in no way putting me or others down. I just thought I would be honest about how it made me feel. Its so hard when you have managed to do the things you have done inspite of AS that when I have my bad days and aren't able to do the house work etc that I am a weak person and not trying hard enough.

I guess what I am trying to say with this long rant (yes Im sorry) is that if someone is feeling like you/we are not being supportive. Instead of trying to justify ourselves and prove we are being supportive. Just accept it for what it is and listen to how the person is saying they feel. We are all different.

I will stop now. This is just me and my opinion but that doesn't make it right. Or wrong for that matter LOL.

Trish
xxx

Okay, but that's the thing, nobody characterized anyone else as having "moderate illness" or anything else for that matter, where are you getting that from Trish? I know where it came from...someone alleged it and it became the truth although it is not.

Come on Dow, sort it out! If you insist on being so mad and radical then maybe you could take a leaf out of Alan's tree and try including some humour into your posts.

I know that Michelle. Sorry if it sounded like I was saying that someone did. My comment was in responce to Dow and regarding a post on another thread where it was said that (not a dirrect quote) People with severe AS have a visable hunch and/or limp.
Kevin please feel free to correct me if I got it wrong.

Yes, I think I'm reading the same posts!

And I'm not angry here, certainly not because of any mention of AS-

My response is about the diagnosed/undiagnosed topic, and how I feel there has been pressure on some of us to suggest we stop looking for solutions.

Even though we know it comes from a well-meaning and caring perspective, comments like Wendy's quoted below DO have a seriously discouraging effect:

(and this is where my remarks about moderate/severe/slight came from)

Trish I am not putting any one down and I did not characterize any one.I have always been supportive of every one who comes on here and always will be.All I was trying to say was try and have a life as best you can and don't be like some who get obsessed with diagnoses.
I would just say thank you Dow for screwing up what could have been a nice discussion on friendly terms.
It seems to me that no one on here is allowed to have a civilised discussion any more because certain people don't like it ok discussion over as far as im concerned.
I apologise to any one who has been upset by my what I thought was an innocent post.
Good bye.

If you didn't like what was being said here Dow, all you had to do was close the link, just close the link... you didn't have to come in this thread, you were just looking for trouble when you did so...