Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Lots of questions?

Hi All,

I don't know where to start as i dont feel i belong here now. I was tod i had AS 2 years ago by my rheumy, then she moved overseas so i was referred to another rheumy. I saw him yesterday. He told me i dont have AS. What do you guys think. I am 44, have had back pain for over 10 years, then 2 years ago, the pain hit everywhere. I am HLAB27 Positive. I have a brother with AS and the pain in my chest and hips is shocking. The questions i have are about x-rays i have had in the past. Does anyone know what any of it means:-
1) I have Bilateral Sacroilitis
2) Seronegative Spondy Loarthropathy
3) Anterior Spondylotic lipping is seen at L2/3 to L4/5
4) Narrowing of the L4/5 disc
5) Spondylotic bone reaction.

I looked up what i could, and it all leads to AS, especially the first 2. I also have limitation of flexion in the cervical spine.
This doctor that i saw yesterday told me i have no inflammation even though a bone scan showed inflammation in my thoracic spine, shoulders and hip joints. Does ther have to be swelling to be inflammation? I have never had any swelling anywhere. His reasons for saying i dont have AS are:-

1) Blood work is fine
2) He couldnt find swelling or inflammation
3) I have been on methotrexate, salazphrin, arava and gold injections with no success
4) He thinks my x-rays mean nothing

He told me i have fibromyalgia, and ok, i already knew that!! FM is not an inflammortory disease, so why does celebrex help?

Sorry for so many questions, i just dont think he is right and im looking for answers i suppose.
If you can answer any of these questions i would really appreciate it. This place has been a life line the last 2 years. You have all answered questions better than any doctor.

Shirl.

Sparkels

I am not a rhuemy so would fall short of trying to diagnose you from an internet post although the symptoms / problems you describe are certainly familiar, basically a deteriation of lumber spine and inflammation of the sacro iliac joints (between the sacrum and ilium of the pelvis).

One of the main hallmarks that seems to set AS apart is Iritis. Have you had bouts of this problem?? This can almost clarify the confusion.

Unfortunately with AS being the disease it is, and sad misunderstanding within the medical fraternity about it, you may be best seeking a number opinions from other reputed specialists in the area.

Coming from one who virtually self diagnosed I also found personal research quite revealing albeit very stressful because you jump to sometimes wrong conclusions.

Find a rheumy who listens, is well informed and expwerienced with AS. That'll help a lot.

Good Luck

Jonno

Hi Shirl,

First off, I think others here would agree with me in saying that through all your symptoms and similiar ailments you still belong here regardless of the actual "diagnosis". If you have found hope, information, and support being here then the dx shouldn't be all that relative.

Also, I too think you should look for a second opinion. I would certainly question any doctor who discounts Xrays and other medical info. concerning you and your particular symptoms. You know your system better than anyone and no one should feel unheard when seeking help.

My prayers are with you, I hope you find some more definitive answers and help soon. Take Care.

Tiffany


Behind every cloud of smoke is a rainbow to be found.

Hi Jonno
Thats it I never have had iritis.I have no swelling, just all the pains,in the joints as well.The lumber spine is not much good from what I can understand,and the SI joints are always hurting.I will have to find another rheumy and see what happens next time.This rheumy is a professer and supposed to be really good.But I never even got chance to tell him I have a brother with AS.When I told him I was HLAB27 positive he said "So is 10% of the population" I thought that gene was a marker for AS????? He has me totally confused!!!!!!

Shirl

Hi Tiffany
I know your right and I should be comfortabe here still,but there is this little part of me that keeps thinking If I dont have AS I shouldnt be here.But this other side of me keeps thinking this doctor is wrong and I do have it.I`m very mixed up at the moment.I see my own local doc on Friday so I will ask her what I can do.I cant believe he dismissed my diagnosis just like that.At the moment I am sitting here with sharp pains going from my back to the front,the breastbone is hurting.I still think I do have it,its just like a lot of other people here,we have to find someone who will listen to us.For the last 2 years I have been told I have AS,being told I dont have it was a shock!!!!! I was still trying to get used to the fact that I have it.Thanks for your advice!!!!!

Shirl

Oh, boy, here we go again The problem is, of course, women fuse later than men do so there is not the radiological evidence staring the doctor in the face. But there is something called undifferentiated spondylarthropy, sort of a pre AS, AS without the fusing (spondylitis without the ankylosing). I simply cannot understand how doctors leap from "It's not AS" to you not having a problem with inflammation that potentially can lead to fusion and mechanical damage, totally missing the DX of undifferentiated spondylarthropy. I had a DX of RA of the spine and peripheral joints (odd, RA rarely affects the lumbar spine, only the cervical spine, but I've been told it was an old name for AS) until x-rays revealed fusion of my SIs over 20 years later - - yep, took that long for them to fuse. But at least I HAD a DX. The problem with getting stuck with a fibro DX is that the treatment (what treatment?) is totally different, not focused on relieving or preventing inflammation, and you are not a candidate for one of the newer DMARDS that work so well at preventing damage. So 15 or 20 years down the road when you do start to fuse I guess you can take some comfort by the fact that you were right and the doctor was wrong (cold comfort) I'd get a second opinion and ask about undifferentiated spondy.

Cheryl


My guy

If you can't be a good example you'll just have to serve as a horrible warning.
Jennifer Cruisie

Dogs mean it when they kiss you

Hi Shirl,

Doctors eh, what do they know? Would n;t let alot of them look after my dead dog!

David

Thanks Cheryl
I see my own doctor on Friday,so I will be writing everything down that I learn from here and showing it to her.She is really good though,its the rheumys I am having trouble with.This idiot yesterday had FM in his head and wouldnt even look outside the box!!!! They make me so angry,is it because I`m female he doesnt think its AS!!!! I have the feeling he would think like that.I will try to see a different rheumy,thats all I can think of to do.Thanks for telling me about undifferentiated spondylarthropy,I will mention that for sure!!!!! Thanks.

Shirl

Hi David
Thanks for that,I needed the laugh....lol....but how true you are!!!!! Thanks for all your help over the last few days,without friends like I have found here I Know I would be totally lost!!!!

Shirl

Hiya

I see you have bilateral sacroilitis, but are you fused at all there? (or anywhere else by the way?)

Some rheumatologists still live in a dream world and think that you cant have AS 'UNTIL' you are fused........What a load of old 'poppycock'!!
Why should one have to wait to fuse before being told what it is, and how best to treat it (when its too late)?
And contrary to popular belief, you DONT need to be B27 positive, or have had iritis to get a dx of AS.

Heres to hoping you can get this rheumy to see some sense!