Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group X-ray results

Today I received my x-ray results from my Dr.
This is what he emailed to me:
XR now back NO Ank spond seen BUT is evidence of wear and tear ie disc narrowing L 45 and L5 S1 with minor degenerative change ie does NOT suggest any progressive arthritis.
What do you think of this, I will ask him to advise further but I thought someone here might be able to advise further, maybe someone has had a similar X-ray. I think my Dr has already decided it's not AS.

X-rays aren't very dependable if you're early in the progression of the disease. MRI might be helpful, but still not very reliable if very early in progression or recieving treatment. Its sad that rheumatologists don't seem to use common sense or intuition at all. Instead they choose to deny the existence of a disease until you have bony formation and its too late.

If you trust your doctor and are satisfied with what he tells you, then great. If not, second and third opinions are a good option.

Mel81 - Mike is correct. It 'can' take many years for AS to show up on X-Rays, i.e. SI narrowing etc. In addition, X-Rays do not show up inflammation. Need an MRI Saggital STIR t-1, t-2, fat-sat, coronal etc etc. IOW, all singing and dancing, and useful to throw in a contrast dye. X-Rays are not going to hack it for the initial diagnosis. Can take years for the AS changes to show up on X-Ray!

ASAS/EULAR are hot on the education of rheumatologists but it is a long struggle to get the information out there !

Suggest you go find a rheumy specialising in AS - they are about. Check with your AS Association. For the USA it is SAA : Spondylitis Association of America. SAA are doing a grand job and they have a ton of info to go check out. Membership is worth while. Also suggest you check out the research forum here on KA - another ton of information including the ASAS/EULAR Handbook and other relevant research papers.

Need to be pretty pro-active...can be a mite overwhelmming, but upwards and ever onwards...

Take care -

Thanks for the replys. I'm not sure I do trust his opinion on this but I am only 33 so you never know what might happen in the future. I am most probably in the early stages so nothing yet showing up. I am interested to know what the degenerative changes mean, I wouldn't have thought that would be common at my age.
I will talk to him about it some more and possibly get another opinion

I had several doctors who decided that I did not have an inflammatory arthritis even though I do; simply, they were wrong.

But for me, it wasn't just the joint stuff that decided it, but this list that helped. Maybe you have some of these other symptoms:

GI inflammation (gastritis. inflammation and small crohn's like ulcers in the ileum. Constipation often. At times diarrhea with inability to digest food. Turns out this started back when I was a child, probably at birth, definitely before school. Came to a head in a big way when I turned 30)

Enthesitis (from age 35 (now 51), years of tendonitis, torn tendons and ligaments, from the simplest every day activities (when I flared)…went through periods of time where I'd tear a few things within a week or two's time. years of PT, ultrasound, ice and heat, physiatrists, hand surgeons, a few cortisone shots, etc to deal with the enthesitis. The worst have been my wrists, rotator cuffs, IT / TFL band connection, hamstring tendons, etc)

Psoriasis (but only a little. What I thought for years was "dry skin", the dermatologist and then rheumy told me was in fact psoriasis. No its not normal for the elbows to look like you skinned them on the concrete falling down when you hadn't in fact fallen. No it wasn't normal for them to get a bit bloody. No it wasn't normal to have these dry flaky patches of skin here and there. Eucerin always helped so I just assumed dry skin. but it was mild psoriasis all along)

Flares. (I wish all rheumatologists understood flares or accepted that they are real for many of us. Just because I look good, doesn't mean I don't hurt. just because I don't hurt much today, doesn't mean I wasn't in agony last week)

Some Nsaids (for me Aleve) work to some extent. Pred works amazingly well for me. But something I was only offered once I found doctors who would treat me. No one would even give me pred to try.

erythema nodosum (turns out the weird skin rashes I was getting (mostly on my shins) was this classic autoimmune rash. Needed to find a dermatologist and rheumatologist (who was good) to know this. Photos of skin stuff can be very useful, even years later, once you find the right doctors. This is true for the psoriasis as well. Too bad we can't take photos of what is happening to us under our skin.

Neck and SI joint flares. I could write pages on these, but suffice it to say that these have been the worst of my problems. This is pretty classic for the spondys. Not a lot shows up on MRIs or even the bone scan when I wasn't flaring. But finding doctors who listen to symptoms and treat symptoms is awesome!

Dry eyes. (only when I flare)

Mouth sores. (only when I flare)

Fatigue. (only when I flare)

Blue moods. (only when I flare)

Basically, find sites / sources that list the various autoimmune symptoms and see if you can get a dx from putting the whole puzzle together.

It was the GI inflammation along with the joint stuff (enthesistis, sacroiliitis, neck inflammation), flares, how I responded to pred, and the other more minor symptoms that got me the dx….not one piece of the puzzle, but the whole puzzle.

But until I figured out it was spondy and started telling rheumies about the GI stuff and the joint stuff and the skin stuff…not one rheumy asked me about anything other than my joints, and I didn't know all these symptoms were connected. I just thought our family had GI issues and joint issues and thought my skin stuff was no big deal. When really its all connected. I know that partly because now on Humira, all that stuff gets better with each Humira shot, then in week 2, it all starts coming back.

It did take me 12 years and many rheumies to get to where I am today.

So keep at it; even if its not AS (mine is undiff spondy), you need someone motivated to help you feel better, however that is done.

Hi, Mel81:




X-rays in the early stages of AS are not definitive. In the hands of physicians who do not have any ability to actually help PREVENT damage due to Pre-AS activities, they are only confusing. HOWEVER, a physician who is able to believe that an average person aged 33 years would have 'wear and tear,' is one guy to RUN from!

Check out the 6 symptoms of "Pre-AS," and study the material here, even in my "Important AS Resources" link in signature below.

HEALTH,
John

My GP still won't refer me to a rheumatologist but I am on waiting list to see a physio. I guess I will ask the physio for more information and what they think when I finally see someone.
My Dr hasn't given me any answers at all. I asked him if that was normal for my age and I didn't get a clear answer just that he thinks it's not any sort of arthritis.
After a month of feeling great and practically no pain it has returned today. Just when I was starting to feel really good about everything.

Get a new GP...........