Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Hello from the Newbie

Hi Tulip,
Welcome to KA go ahead and whinge away its good to hear others storys.Helps us to understand each other.


Kevin

Hi Tulip

Welcome to KickAS. Please don't worry about whining, we call it "venting" which we all need to do from time to time. We have all had succeses and disappoinments in our AS journeys. You are now among friends who understand and care. Share your story....we want to hear it....really we do.

Hi Tulip,
Welcome to the KA community. I assure you that you will find a wealth of information here in kickas community to fight your A.S.

Cheers
Alex

Hi Tulip. Welcolme from another newbie !

All the best
alison x

Hello All

Sorry I didn't get back here sooner!
My Story...I guess to start with I should say my daughter was dx with As in 2006. After seeing what she was going through the alarm bells started to ring. I've had all these sore spots on me over the years but always justified why this or that was sore..you know
over done it...shouldn't have lifted that it was too heavy.
When I would mention to my hubby I was so exhausted and sore he would tell me I was unfit and needed to exercise more...so I learned to keep quiet. I didn't like being told that and exercising on a normal level just about killed me. I would be sore for days and wondered how a normal person could do this to their body. I now know that I have no idea what "normal soreness" is.
My daughter took 7-8 yrs to be dx. We were constantly Dr shopping hoping to find out what was wrong with her. All we were ever told was she had a "virus". We kept with same Dr till you would walk in again and you tell they were thinking..oh no not you again...time to change and start the process all over again.
This went on for yrs till we finally found a good one.
While taking her to see her rheumy in one bad flare up for an injection, my daughter told him I get sore. He said I would have AS for sure. He wasn't taking on any new patients so he gave me a list of rheumies to see.
I went to the first one who took one look at me and prodded here and there, fibromyalgia he said...nothing you can do.
I wasn't happy with the 5 mins dx so I saw another...same dx but he added sero-negative rheumatoid arthritis and osteo. I argued with him saying I could not have 3 separate things wrong with me.
I didn't get anywhere just sick from taking all the medication which wasn't doing any good. My local dr said no I didn't AS either. Not one of these Drs ordered xrays, bone scans or blood tests I might add.
My daughter had enough and email her rheumy telling him the story. He replyed saying he would see me. He sent me for the above tests...and what do you know...Grade 2 sacroilitis, inflamed areas on the bone scan and esr and cpr were raised.
I really wanted to go back to the other drs and say...see you were wrong!! I didn't though.
I started on Humira and prednisolone. Pred worked but humira didn't. So I am now on remicade and wow the fatigue lifted about 15 hrs after the 1st infusion and hasn't returned...it was like a switch being turn off. Amazing.
I have weaned off the pred this week...yay no more... I have been on pred since August and hopefully the weight gained will start to come off.

What I find really hard is not being in control like I use to be.
I hate that this disease dictates what I can and can't do.
I hate that I wake every morning stiff and sore and am reminded straight away that I can't do what I want to do. I feel so lost sometimes. Not alot of people understand because you look normal on the outside. In away I'm still trying to understand it all.
I look at my daughter and I can understand everything she is going through and if she is having a bad day I understand.
I don't seem to be able to except that for myself though. Yeah I know nut case ha!!! I hope you know what I mean.
I'm really glad to have found this forum....and will try not to whine !!

Tulip

The run around you had to go through to get the diagnosis is just awful Tulip and it happens far too often. Thank goodness for your daughter's intelligent Rheumatologist!

You are not a nut case! And yep, we know what you mean.

Welcome to KA. I really hope you'll enjoy this great group!
mig

Hi Tulip

Thanks for posting your story. I actually was reading your original post today and wondered what happened to you.

Your story is SO familiar to most of us. Most of us have had to jump through hoops(painful) to get a DX for AS. The part about the 5 min DX almost made me laugh (sorry). My first encounter with a rhumey was pretty close to your expierience. The rhuemy walks in and asks me what I was doing there. I told him I think I might have AS. He scowled and asked why I thought I had AS. I explained how my GP suspected AS by all the symptoms I was having. The rhuemy looked at me and said,"YOU DON'T HAVE AS". I should have walked out then but I let him do a few mobility tests on me. He then wrote out lab work paperwork at my request and then he walked out the door. I was devestated. I told my GP on my follow-up to never send me to that @ssh0l3 again. My GP apologized and told me he had never used him before and the rhuemy he usually refers to was on vacation.

I hope you enjoy your stay here....Dow makes great iced tea and Kat makes delicious cookies.

all kidding aside....welcome back

still in the middle of my dx saga......so, i know.
glad you got through to the other side!

Hi Tulip,
Weclome to kickas.org. Nobody should feel like a whinger here. Go ahead and post your story if you like. This is what this forum is for, to lend an ear when we need it, or to get advice when we need it.
Nice to have you here.
Take care,
James

Hi Tulip and welcome to KA.

Your story is, sadly, far too familiar to too many of us. I'm glad your daughter's rheumy relented and agreed to see you. He sounds like a keeper.

I totally get what you're saying about Remicade. It was a revelation to me just how much in my life was explained and resolved after I started on it.

Never worry about being a whinger here. We all do it at times.

Hugs,