Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group xray?

Hi all...

Had a quick question...as a I posted before, i have been seeing a rheumy for diffuse joint pains...had a + hlab27, and bone scan showing inflammtion in practically every joint. Last time I saw the dr he told me i had "inflammatory arthritis" of some sort, and prescribed be enbrel because of the extent of disability I am experiencing. At the same visit he also ordered pelvic xrays that had special SI joint views. I received the results of those xrays today - negative. I don't understand how this is possible I have such horrific SI joint pain, hip pain and deep buttox pain. Have any of you had all these other symptoms but not early xray changes? I am afraid this will interfere with me being diagnosed with an actual name for what is going on, despite my other symptoms & positive tests.

On a brighter side - I found out my husband's insurance will pay for the enbrel, with only a $25/month copay...when my insurance wouldn't cover it at all. What a load off my already aching shoulders.

Thanks for lending an ear.
dana

Yeah, docs like to give you meds before they even know what's goin on. It totally depends on how long you had your complaints. In an early stage it won't always show up and that is where the MRI comes in. When i had my x-rays taken it was all over the place, MRI comes in if you want the details then, but not needed for diagnose. Just my observation, hope it helps.

Sometimes it takes a while for the joint damage to appear on an x-ray. When I first had problems I was diagnosed with FMS or Fibromyalgia because nothing was showing up according to the rheumy. Of course he disregarded my history of injury.

The pain that you are experiencing is probably coming from your muscles and ligaments. They go into spasm when they are trying to protect the bone from further injury. You need to start working on a daily exercise program so that these core muscles and ligaments remain strengthened.

It has taken me 18 years to get a dx of Ankylosing Spondylitis. When I was first examined there was nothing on plain ray. There was some inflammation on the bone scan that was done at that time. My repeat bone scan showed higher levels of nuclide uptake, which led the doctor who reported on the scans to determine that I had arthritis in most of my joints. That lead to a diagnosis of generalized osteoarthritis. Two years later and the inflammation began to show up in my blood tests. My own indicators happen to be a rising ANA, which is now 1:80, and an increasing rheumatoid factor, which is now at 66. Some of my previous x-rays had shown small signs of sclerosis in the SI joints, and one indicated that I had sacroiliitis associated with spondyloarthropathy. My latest x-rays showed arthritis in my thoracic spine as well as in the sacral-lumbar spine. Now my feet x-rays have shown up arthritis in the metatarsals. My ankle joints are not at all severe, which is good news, but I have bone spurs on both heels, with the left one being more prominent. It has taken the 18 years for these results to become clear. Up until now the results have not shown much in the way of degenerative or other change.

I have no doubt that the rheumy will discuss these results with you. The results are in some way good news because it means that you have not reached the worst stage - when the AS causes bone fusion.

Hi, dana:

Pain does not show up on X-rays and even inflammation of the thin periosteum and synovium at the SIJ junctions are not easily imaged.

If you are already getting the Enbrel with insurance coverage, you probably don't really need a diagnosis, for now. The diagnosis of 'Pre-AS' is starting to catch on (Pre-AS), but it is the rarest rheumatologist who can actually tell you how to avoid eventual fusion-damage at the SIJ

The course of AS is very different in women than men, and they can take much longer to fuse. One lady, in particular, has NEVER fused because she has been on her own diet (Carol Sinclair).

Good luck to You,
John

Dana, the important results, to my mind, come from the bone scan. It is telling the true story of your disease progression. X-ray visible damage can take a really long time to occur in women and because of this, some of the top researchers in the field have been re-examining the diagnostic criteria for AS.

To give you another example. I started having backpain almost 30 years ago. Had a major sciatic flare in 1987 that lasted over six months and during which I couldn't walk, stand, sit or lie down with any degree of comfort (I was a bartender at the time - work was fun). In 1991/92 I went into a full AS flare - iritis in both eyes for 18 months, couldn't walk after sitting for any length of time, pain levels that went off the scale, energy of a snail - you name it, I probably had it. I was at the chiro 5 times a week - my family doctor prescribed bedrest - no pain killer helped - my opthamologist took so much blood trying to find out why I had iritis that I'm surprised I wasn't made permanently anemic - my psychiatrist was convinced I had some kind of arthritis, but never actually recommended to my GP that I be referred to a rheumy. No-one could figure out what was wrong with me. Had they done a bone scan, perhaps I would have been diagnosed then.

Fast forward to 2001 - I'd been in flare (sans iritis, thank goodness) for five years and finally, my new chiro figured out what was going on and recommended that I go to my GP for tests. I had asked her to take xrays as I was convinced there was something wrong. The xrays showed that I was either fully or partially fused in the left SI (depended who was looking at it as to how fused it was) and I had four squared off thoracic vertebrae. FINALLY!!! I had xray damage that led to a conclusive diagnosis of AS.

oh joy. oh bliss. let's all do the happy dance. except I can't move.

Bearing in mind that I am not a doctor or remotely an expert, the fact that you are B27+, lit up like a Christmas tree on your bone scan and where your pain is tells me that you do have AS, or perhaps one of the sPas. The deep buttock pain is more than likely sciatica, one of the early indicators of SI involvement. The hip pain could be your hips, but may also be your SI/Lumbar areas screaming (depends where on the hip line the pain is located) and the SI joint pain is pretty self-explanatory. The SI is classically one of the first areas to show damage in many patients. But it can take years to show up on xrays. If your rheumy doesn't realize this, despite having very wisely prescribed you Enbrel, he needs to be re-educated.

In my not so humble opinion, anyway.

Hugs,

Did the rheumatologist actually look at the images him/herself, or did he just read the report ? Because this is extremely important. Nowadays in some instances your ex-rays may be read by a technician or physician in ANOTHER COUNTRY who does not specialize in rheumatology and is totally unfamiliar with AS, and thus has no idea what he or she is looking at because AS is a rare disease. Yes, even reading ex-rays has been outsourced to "save money".

I mention this because in the 1980's/90's I had a series of views done showing changes in my spine and hips showing enough damage to diagnose me. (I cannot remember not having sciatic pain, I've had it since I was a teenager, to me it seems normal). In the early 2000's I had an episode of severe flare, I had an ex ray done by a large, well known HMO of my lower spine, which resulted in them sending me a postcard in which the brilliant and concerned doctor wrote: "we are (crossed out)pleased, "sorry" to tell you that your x-rays are (crossed out) normal, "show arthritis". "
That was it.
When we finally ditched that insurance a few months later (I wanted more than a post card as my right leg was numb and dragging) and got different insurance, I went to a different doctor who referred my to the Neurologist from Hell. She sent me to be ex-rayed, and subsequently kept ordering more and different tests. She insisted there was absolutely NOTHING showing on my ex-rays that indicated anything was wrong. When I finally got the actual reports, the reports of course said differently, but she was not even bothering to look at the images herself, and I was pretty sure from the signatures on the reports that they had been seen not by anyone local. I understand that there are physicians that specialist in radiology intrepretation, but you also have a right to question just who did yours.

I would ask your rheumatologist if he/she had actually LOOKED at your images, and no matter what the answer, get copies of the actual intrepretation of the images and see who signed off on it. You deserve to have your images looked at by someone who is familiar with AS, if this is not done, have someone else look at them.
That said, females tend to fuse much slower than men, and waiting for fusion (which some unfortunate doctors seem to think they can't diagnose without it) is going to take forever. This does not mean that sh*t is not going on, it just means it's not BLATANT.
There are also images on the Internet you can compare your own images to.
Female with AS, case 207 hip/sac from uwmsk.org
This site, John Hunters's MSK Teaching File, has a lot of AS images.

Thank you all for your replies. I feel better


I have not actually seen the Dr yet regarding those xrays, and when he was going over the report of the bone scan with me, he did say "what they do or do not see on the si joints may not matter yet". So, I don't know, or think that he is going to dismiss me because of them. He is a really good doc. I think that being a nurse, and an emergency room nurse at that, I tend to assume that unless there is something in black and white I will be written off, because I have seen it happen so often. Plus I'm certain, as you all feel, when you're feeling so absolutely AWFUL, you want physical proof (as if the not being able to walk, use your hands or feet is not enough proof).

Thanks again for all the support...its the core of what makes this place so great.

Hi Dana,

When I had my bone scan done it showed I had inflammmation in the lower back and hips, it was a nice bright red color.

Later I was sent for an xray and it came back negative. The only thing that caught my eye on the report was that I had ostephytic changes in the SI's. That was later explained to me by an intelligent doctor that it was bony growth. Funny thing is when I asked the doctor that originally ordered the xray what 'osteophytic' meant she could not give me a definition.

Luckilly for you, you have been prescribed Enbrel. Be thankful for that.

A lot of people are written off, labelled a drug seeker or malingerer and made to feel it is all in our heads. When indeed the pain is real. That only leaves people to suffer with the pain and avoid the doctor like the plague.

I hope you have success with Enbrel.

Take care,
Cara