Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group New and scared

Ratbag,

welcome to Kickas.....there's a stage we go through like bereavement, anything can happen and there's no real order to it, angry sadness shock etc, denial....

but as alot have said you've had it for years now you know what it is treatment meds etc can helpa lot. It's common for us to go years and years undiagnosed and struggling!

I would not go reading too much just yet, AS is a funny disease, and effects us in different ways, but as you get used to the diagnosis, then start learning and there's nothing like posting here as the expereince base is very large, and often the niggly or bad things that can happen get spotted by the community long before a Dr wakes up to it! (sorry not Dr bashing just how it is!)

David

Hope this helps!

David

Welcome to KickAS. Hope you learn some good stuff to help you deal with this lovely disease we share. Ask away and feel free to vent, too.

hi rb...and welcome.

though i'm in the early process of testing, etc. and haven't been dx'd with AS...i can certainly understand your frustration. it's difficult to communicate to your family how elusive the dx process can be. most of my family is content that i'm hla-b27 negative and that pretty much is enough for them to think i don't have it. most are still on the "stiff back" or "pulled muscle" deal...yet when i express my other symptoms...burning joint aches in very random places nowhere near my back, along with suspicious eye problems, they find something other than the possibility of AS. i know it's probably a frightening prospect to them (as it is to me) and they don't want to entertain the thought...so it's somewhat understandable...but still frustrating.

so, no, you're not a nutter

stay well...

-j

Welcome to KA hang around and you will meet
lots of nice people who are more knowledgable
about AS than most doctors.
My son has AS and I am so glad I was able to
sit in on his first visit with his Dr. when he
was diagnosed, he talked with us for two and one-half
hours, telling us what to expect and everything he told
us has come to past, unfortuntaly, Mike is 42 and has
both hips replaced.
This disease affects everyone differently.
Sorry you had to suffer so long before being dx'd.
Try to keep a positive attitude, and exercise as much
as you can tolerate. You will get lots of good advice
from this site.
Welcome again and hang in there.
Good Luck,
Maxine

I get asked all the time about my nickname. It started in childhood, I was a challenging child!!! So Dad nicknamed me Ratbag and I've answered to it ever since.

Am under Dr Hordon as Dewsbury, she is great, as are the 2 rheumy nurses. Used to work at Pinders though, now work at Dewsbury, handy for appointments!

fear is a huge part of the process. To suffrer from chronic pain is hard. Not knowing why is hard because you can't get the right help. But there is hope. Hope that when the docs finally figure out what you have you will get better. You almost hope for a magic pill.

Being diagnosed with arthritis is a process. Now you have to come to terms with the fact that you have a progressive degenerative disease. You will get worse (espec w/out treatment), and the end stage is not a pretty picture. You have to accept that you will be in pain for the rest of your life.

It's scary, but there is a zen state that happens from accepting the disease and working with it and with limitations.

lord knows i still have periods of denial because you just get so sick of being sick

communication helps

chin up
-Vans