So, I haven't been on in awhile due that I've been busy. My rheumy did an x-ray of my back and found arthritis in it, and he thinks I have Ankylosing Spondylitis. Tomorrow(today) I have a CT scan to find out if I have it, and I'm not sure what else they plan to do. heh.
Yeah, I'm kind of scared...
Hello SK,
I can imagine you are scared. The name of the problem is enough to scare a person to death. :( I hope the CT scan finds the problem for you and the doctor can prescribe something to make it feel better.
Hang in there, we are all here when you need us. Let us know how things go with the test.
Hugs, Pooh
Hey SK,
Goodluck with the test. Its scarey when they throw these big names at you. There are a few people with AS here, so if it turns out you do have it then there is some good support. If not. its another one to strike off the list.
I'll keep my fingers crossed its the latter.
Pud
Hi Sk, I hope it all gets sorted soon for you. The music teacher at my school has AS in a mild form as well as Lupus but it doesn't cause her too much trouble. She's in her early 60's, takes plaquinel and last year had a few back issues. I remember she was really scared and went to the specialist for a scan (think it was an MRI). Anyway all was clear, nothing new had developed and she was put on a low dose of amitryptiline (helps with nerve pain) and it's done wonders :) She started to feel a lot better after 2 weeks :) Hope your's goes well too :)
Let us know how you get on,
Lesley (NZ)
G'Day SilberKatze :)
I can relate..
Ive got AS...it does not sound so bad when you just say AS..
Ive had it since I was about 29...Im now 43...I didnt know I had it until 2 years ago...Doc kept telling me I was slouch potato and that was what kept giving me pains LOL...he was fired btw. :)
So this AS thing can move slow or faster..it all depends ..we are all different..just like any other disease any of us might get..it affects people differently...
Please if not already get checked for the gene HLA-B27..IM positive..not everyone is who has AS...the significance is if you have AS and you are HLA-B27+...can make a difference to how the disease manifests and also if the Doc knows you are HLA-B27+ how he thinks he will treat you.
I get back pain especially in morning...I once only got pain every few months..but now everyday..
I stretch exercise everyday..which helps..and in the morning I try and do hip shuffle while Im still in bed..the shuffle sometimes eases the pain enough to continue to rest.
Im going to buy a TENS machine to see if that helps..
Your Rheummy will be the primary carer for this issue.
My thoughts are with you.
All my Best
Ron
Well, The CT scan went well. I don't know the results yet, but they'll call me if they find anything. But I tell ya, I'm kind of scarred of those things now.
They had to do a pregnancy test before the CT scan, so I was there till like 3pm. I left at 1pm to go there. heh.
Good Evening SK.....I too have AS. It was discovered after I had been rear ended in a motor vehicle accident. The accident was mild but my neck pain wasn't so I went to get checked.
The diagnosis explained alot of weird things that had been happening to me. I have an area where the spinal cord is being flattened and had spells of painful legs and lose of movement...then dissapear.
Physical therapy helped alot at that time. I now experience arm pain and a general pain in the neck!
Neg on the B27 for me....Ron...where on line might I find info on other gene numbers that did show up on my test?
SK...good luck and I'll check in to see what you find out. Take care Shari
Hi Shari
Great question
3 genes so far found to be associated with AS they are
HLA-B27,
Recently Identified: IL23R, and ARTS1.
For Info: MS has strong associations to gene HLA-DRB1
IL23R is linked with Crohn's ..so if a drug works for Crohn's and stops the action of IL23R then it may work for AS ! so its worth keeping a look out for that.
You know Im sure they have not got all the genes yet...more to it..however Ive learned a little more myself today so Cheers !
Every ounce of new info..may bring more light and therefore more answers for us.
All me best
Ron
Ron..where can I find info showing what other gene numbers indicate. In particular, other HLA antigens. A's, B's, and C's. Thanks..I guess hoping to find one list is asking too much tho I did find that B60 is strongly associated with AS and that was present in my testing. Thanks Shari
Shari,
Ive not found one list.more information is spread across papers and articles.
Heres one with quite a good discussion showing genes associated with AS including who are HLA-B27-
http://www.emedicine.com/med/byname/Ankylosing-Spondylitis-and-Undifferentiated-Spondyloarthropathy.htm
Thanks..I will check it out. I did also find 3 of the other markers I was looking for...all three point to Leukemia. Having this info does not bother me much, especially without talking to my Doc about it. There are many variables with gene science, but for those who would rather not know that they may be at risk of certain illnesses..don't go hunting around!!
Okay, so the CT scan came back. It's normal as fas I know. My Rheumy is worried my RA is getting worse, so he got me new meds to try.
Sulfasalazine 500 MG TBEC
And with this, I gotta get blood work done every month. My next rheumy app. is December 3rd.
Good luck with the new RA med SK, let us know how it goes. Glad to hear the CT scan was okay.
Pooh
Goodluck SK im hoping the new med helps you big time.
Pud
I hope it works too ^_^