Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group I Don't have AS!

I hope your not going anywhere 9of10 your a part of the KA family now and sound like your going to need the support from us.I'm sorry you have the problem with your health coverage I don't understand that system not something we have to worry about in the UK.Please stick around.

Kevin

That is so kind of you all (except Kevin ) to let me stay even though I'm not officially an ASer!

At least that means if I do start fusing, the up side is that I will be back to being official!

Mwhahaha

Hello James,

So sounds like you still have AS, but for red tape purposes you do not. Well, whatever the case may be, hopefully you can continue to receive the treatments that are effective.

Keep on Kicking

Tim

My grandmother went through decades and decades with the disorder changing with every doctor. As my rheumatologist said, the disorders are all related - and sometimes can gravitate into other things. For instance, my grandmother went from TMJ, to polyrheumatica, crohn's, to rheumatoid arthritis, etc. My mother had severe lower back pain and now tinnitus (inflammation of inner ear). We're all inflammation sensitive.

I guess I'm realizing that the diet and protocol we're on is right - even if the disease shifts?

As you know Jimmy I live in QLD. I don't have fusing yet either but still have a diagnosis of AS. All other symptoms and precurses for fusing are there including positive gene. So I dont understand why they say you dont have it now.
O know you dont realy care what they call it as long as you get what you need but still.
If this were the final test for AS then I have to agree half of us here maybe even more than half would not "have" AS.
Just too confusing for me.

I think the problem is its too easy for Doctors to put us all in one pot.Because we all have related diseases with very similar symptoms some of which are Identical its easier to say AS than do further investigation into symptoms.This I think is a bad thing because a lot of research that could and should be done into other Diseases is not because we are all said to have the same Disease. I don't know what the answer is it has been going on for so long now and there are so many people wrongly diagnosed Its a massive task to separate every one. Ok we all suffer the same and a lot of the treatments are the same and as long as we all get treated the way we need to that's the main thing but I do think we would all like to know what is really wrong with us.

Just my opinion.

Kevin

Hey Jimmy - when I found out I had RA, not AS, they were all kind enough to encourage me to stay! Now there's even a special forum for people like me! Wowee!

Maybe we need a forum for "not yet diagnosed" or "diagnosis keeps changing" or even "diagnosis doesn't seem right".

Hey Jimmy
Congratulations! So I guess you can dance a back-breaking jig now! Just Joking.

I'm kinda like you. Just had rheumy appt. yesterday. Even though she says she's sure I have AS, My doc is keeping Undetermined Spondylarthritis as my diagnosis on my paperwork because I haven't fused and putting AS on paper might cause a big stink with my insurance company. I guess I don't care as long as I'm getting proper treatment. But at last appt. she wanted me to start TNF, now she's telling me it's not necessary (not sure if it's because of radiologist report or because on my paperwork yesterday I put down I was feeling good? Hmm, doesn't really matter right now because I was planning to hold off on TNF.

It sounds like you get to keep your Enbrel? Hope this won't affect your treatment! take care,
Mary Cay