Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Hello Some brighter news

Hi Shawn,
I think most of us has been where you are at now. Being happy that they found something is wrong with us. It's not that we're happy that we have a disease, but that we finally know what it is and can get some treatment wihtout the..."Well, maybe your depressed, or it'll go away, or take to aspirin and call me in the morning" Bullcrap.
I'm not happy that you have this stuff happening, but glad you have the relief of knowing what's actually going on within your body. Now hopefully you can find a good doc who knows about AS and can help you find a way to get it under control, or at least make you as comfortable as possible. What has just happened to you is a very big part of the process..the part that usually takes the longest..the next big step is like I said..finding a good doctor...that can take a long tme too, but once you have these two thing in place, you can try and get on with your life at least knowing your not crazy. That right there is a great feeling. Then you can work on finding the right kind of treatment for you. This can be a battle as well, like we all know... It's all trial and error. What works for one may not always work for another. Now is the time to listen to your body and learn what makes things worse, better, or does nothing at all. Taking charge of your own health is a big part of how you'll feel in the future, but now you know your on the right track.
I think the emotion your feeling now and don't know how to describe is a kind of... RELIEF!
One more thing...stick with us..we can help make the battle easier.
We all care and have alot to offer as far as experience, and plenty of support.
Take Care and good luck.
Lisa

Yes Cheryl, but they still haven't gone as far as to give me an affermative DX.
All they know at this pint is my lower spine does not want to bend anymore and it's taking it all around T10 and T11. That section is hyperextended now, and they " are not sure how to treat me" This from Physo people who handle lower mobicular back pain on a regular basis. But all the same at least it now somthing instead of nothing. It's amazine though how many doctors discount the possibility of it being AS, due to the lack oh HLB27 in my system. My father's damage is more consistant with AS than degenerative disc disease, but to this day DDD is his official DX. Poor guy put up with 20 years of " it's all in your head". Recently he recieved a new doctor who was talking to him about his unrelated heart problems, when discussing pain is his back (without mentioning that he's had sergery MANY times. The first thing the Doc said to him was "it's probably all inyour head". He exploded ripped his shirt off and displayed his scares and said " Is this all in my head too!!! ". So it just goes to show you how they are trained to deal with back problems. Blow the patent off, thell them somthing like
" Everyone has arthrtise in the spine, even me. " To date 7 differnt unrelated doctors have fed that line to me. Including my new Physotheripist. My theripist seemd not to believe me as well until she induced a major flairup right in front of her eyes and she could see and feel the disks puffing out of my spine. Then noticing my lower spine is no longer moving at all, I all the sudden started to recieve serious attention, a differnet tone and manner of speaking, and of course the " Hey come look at this guy"

I'll keep you posted they want me back in tonight to see yet another specialist.

Hi Ray(Icky) Thankyou for your reply.

Winnipeg LOL My wife Crystal is from Winnipeg ;)
Nice to hear from you.

May the beast lay dormant for you and everyone else here at kickas this fine Christams.

Happy Hollidays


....Shawn

Wow lots of replied ;)
Well this ones to thank all of those who I haven't directly thanked for there comments and support. If I had more time to spare I'd reply to you all but my little ones are waking up from nap time now, so duty and diapers calls.

Catch ya all later Mr. Mom to the rescue.

For years I thought I had RA, but in addition to a really bum ankle and finger swelling I always had back pain which was generally ignored until I was forced by pain to finally see a rheumy again, I had sworn off them and dosed myself with OTC stuff but the pain got too much, and I saw all the ads about Celebrex and thought it was worth a shot. The rheumy took my history, did back Xrays, and DXed AS. Then I ruptured a disc (I had lost two inches in height in a very short period of time) and ended up with an MRI. The follow-up ER doc, not a rheumy, called me over the phone and said it was "normal" other than of course the ruptured disc, and who told me I had AS? What I had was DDD, according to her, "normal" for my age. Huh? Not like I was an old lady or anything. She said everyone had some OA in their spines by their 40s, so the calcium deposits were also "normal." And the stenosis. I pointed out I did not have osteoporosis, my bone scans said my bones were 20 years younger than my actual age. So she didn't take a history, didn't read my records, had no idea of my earlier RA DX or my recent AS DX by a specialist, didn't do much of anything except give me the duty call. Oh, and said to take Tylenol for the pain. For a rupured disc? At the ER they gave me two shots of demerol and I was still howling. I went to my rheumy, he started me immediately on short course of steroids, prescribed real pain killers, set me up for PT, and told me the world was full of jerks, many of them doctors. How a doc could ignore 20 years of history and a DX is beyond me, especially a GP who only saw me once. So I was undiagnosed and rediagnosed in record time. Oh, and the ER doc either didn't notice my SIs were fused or chose to ignore it, I suppose fusing is another "normal" part of aging??????

Cheryl


Sugar Magnolia wishes everyone a Merry Christmas. Woof!

Hello Shawn nice to meet you.

Your post sounds much like others I have read. I really dont know what is worse thinking its all in your head or finding out you will be eating drugs and watching every move you make for the rest of your life. Its kind of perverse when you think about it. It took 22 years for me to be dxd and frankly Im more P!@#$ every time I think about it. We all know how hard it is to be dxd however the medical community does not have to lead you to think its in your head.

Welcome to the only good part of having AS

Frankie

Hello Shawn....sure is nice to have a name to put a blame on for all the pain...atleast now you will know what you are dealing with and with help from places like this site you will be able to find some answers and some understanding.

Dan.


Who knows what the drugs will do to us?

I'm glad to hear that the medical community is starting to take your complaints seriously now Shawn.

I agree with you, It is a bit strange that we all get a great deal of satisfaction in finally being diagnosed as having AS. But we aren't mentally warped, just happy about finally putting this frustration about the unknown to sleep.

Congratulations, now you are a bona fide ASKicker.

George

Breb Assyl

>I suppose fusing is another "normal" part of aging??????

>Cheryl

Ya I'm 27 and my PT, told me I have the spine of a 40 year old ;) accually today they told me right right leg is out of allignment, My toes are messed up (but I knew that one, they removed a toe joint when i as 16). They say " For now we are not going to get into what is causeing all this, we are just going to try and correct it as best we can".

So , no DX for a while I gotta let them try and make it all go away first ;)

Think they will succeed ? LOL


....Shawn

So , no DX for a while I gotta let them try and make it all go away first ;)

Think they will succeed ? LOL

When fly

I was so proud of my good bones, bragged to my mom after my bone scan came back that I have the bones of a 35-year-old (I'm 57, by the way). Mom had one and found out she has the bones of a 30-year-old - - she's 77. I did ask the bad doc if she thought my back problems were OA how come it's only in my spine? She had no answer. Rheumy explained I have OA in my spine from years of inflammation, and no, it's not normal, even at my age
- - especially given my history going back over 20 years. And OA does NOT cause fusing in a normal spine!

Cheryl





Sugar Magnolia wishes everyone a Merry Christmas. Woof!