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

Since my last posting, my rhuemie has told me that I have damage in both my s.i joints, but they want to do an mri ' to confirm whether its as or just degeneration' ....JUST DEGENERATION ???? I wish those buggers could have just a taste of the agony I have been enduring every night trying to sleep, being woken up at 4 in the morning with pain that feels like someone is sticking a knife in your back, and give em a couple of bouts of iritis just for tasters. Sorry, but it cracks me up, and I need to get it off my chest. I'm whittering on again I know, the waiting list for mri is six months long ... or £500 to go privately. Good old National Health Service. Right, thats my whinge for the day done - thanks for listening. Oh, and by the way they still havent got my meds sorted, now I am on lodine - great for the stomach, but doesnt touch the pain. Thats 3 different meds in 3 weeks without a whiff of stomach protector), any ideas/suggesions/support would be appreciated. Sorry, I do know there are people out there with much more than this to worry about but thats what sleep deprivation and idiot doctors do to you.
(Very miserable) Jayney x

jayney, aloha

you got to feel whammied...just a thought for you since it's difficult to wear out SI joints from mechanical
damage, finding degeneration in the SI's is the old fashioned conclusive point of AS diagnosis; it's what they
used to use to separate AS from b27+spondlyarthropies...now without offending maggie, unless you're well over
sixty something there is no 'just degeneration'...

personally i have NO SI's at all, well vestiges, but it's invisible in Xrays...that's what happens when the spondy
monster eats its fill...

could i ask, you said no tummy protector, are you taking nsaids, i've lost track...you're not just whittering.
and if your tummy is upset, you ought to ask ...i always give my doctor an agenda at the start of our meetings...
that way he doesn't get untracked.

best of luck
aloha Ben

Hi, yes gone from diclofenac modified release to diclofenac soluble to lodine 600mg modified release because of stomach problems. Rheumie suggests naproxin now, gp not listening to her - any ideas ???

Why don't you ask these 'rheumies' that if it is so desperately important to know for 100% what is happening to the joints then why don't they just hand you over straight away to a pathologist to be taken apart for examination?! Or perhaps, if it would be less trouble for them to experiment on you while still breathing, try treating you for AS to see if you respond.

hi Janey, I replied to you on the NASS forum....

How are the swimmng lessons going btw? I can't swim either and have had lessons before but still can't swim, maybe i should follow your lead and get back in that pool with my floats and arm bands!

Whitter away, Janey. You have every right to feel frustrated. Iritis, SI damage, sleepless nights, unrelenting pain ... you shouldn't have to wait six months for a confirmation of diagnosis. Especially since one of the diagnostic criteria for AS is, at this point, damage to the SIs that shows on an xray.

We have long wait times here in Canada too right now, but your doctor may be able to fast track you. I know it's possible here if the right people talk to the right people.

Also, it doesn't matter what you are on, you should be on a stomach protector to keep you from getting ulcers. Time released or not, these meds can be hard on our tummies.

Is there any way you can confer with another rheumy? Please know you are not alone with this, any of it, the confused medical professionals, the misery, the whittering, the frustration, the pain, the sleepless nights, the stomach eating medications. We've all experienced thse things here. You are not alone. OK?

Now, have you looked at the NSD forum? Even cutting some of the heavy starches from your diet may help your pain levels. And good for you for swimming. It's one of the best forms of exercise for us.

Hugs,

Hi, the swimming lessons are going really well,thanks. I jumped into the pool this week, well correction, I walked off the edge and went in !! go for it, its doing wonders for my confidence

Hi
Sorry to hear ur havin trouble with this. But unfortunately on the nhs its very hard work trying to get a proper dx! I had to wait 8 years before they give me xray and then apparently there is nothing wrong! Like u say if they had to live a day or two in our bodies they deffo wouldnt b so quick to shive u out the door lol I am waiting for results of blood test at mo! I have had a continued fight with drs cus i am fed of "well it must b chronic back pain"!
Good luck with the meds, i have sent u a pm.
Take care
heather