Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group what if they don't "see" AS??

hi there,

i have a question for you more seasoned AS-ers out there.

once i have my little one in march, my rheumatologist is going to order xrays again for me, to see if this time they can "see" the AS to make a definitive diagnosis.

if they can't see it this way, they'll consider doing a nuclear bone scan.

my question to you is this:

if these tests don't definitively show signs of AS, what are the chances of my doc prescribing the heavy duty meds, like, say Enbrel??

i have so many signs/symptoms of AS: the gene, the constant back pain, the iritis, and now the typical AS pains of waking in the middle of the night with muscle spasms and pain and stiffness in the morning that gets better throughout the day as i move. but alas, the MDs have never "seen" the typical SI signs of AS in me, so i still don't have a for-sure AS diagnosis. (although two chiropractors have seen it...one even saw it in my SI joints before i ever had a single noticeable symptoms).

so, do you think they'd still prescribe something like this for me without the visible damage caused by AS? i do have a diagnosis of "arthritis", just not "AS" specifically at this point.

i just really want to stop the disease from progressing....and i really want to be able to sleep again at night, and not feel so much pain anymore..and not feel so much anxiety and depression as a result of all of the aforementioned symptoms.

okay, thanks for listening.

deanne

i would like to know too.
this is about where i am as well.

sue

Deanne,

First, congratulations on the little one!

I wish I could give you a definite answer on this one. In a lot of ways it really will depend on your doctor. I can tell you my own experience, for what it is worth.

I have a strong family history of AS, have the genetic marker. All the symptoms. Have the straightening and "bambooing" of the neck. Large joints affected. I was diagnosed by a rheumy that had told me (and this was before the changes in the neck showed on film) that he personally didn't go just on film or sed rates with AS, as the progression can be different for different people. And he also said he sometimes sees the progression go differently with women than it usually does with men.
Then, I moved. Had to find a new rheumy who, even though she told me she didn't know much about AS, said I couldn't have it as my xrays showed no fusing in the SI region. She told me I must have fibromyalgia. It can be very frustrating indeed.

I hope all goes well with the birth of the little one, and that you have a good doctor.

Take care,
Pam

Deanne,

I saw rheumies who said I had no signs of AS even after a diagnosis. When they did a total spine mri they found most of the AS damage was in my thoracic and cervical regions showing the most nodules or tumors depending on your doctors way of explaining them. Xrays of the SI does not always show the damage. Sometimes your hips or other joints show signs before the SI does.

A lot of us go threw years of going to doctors and hear our pain is in our head before we get a diagnosis. I went almost ten years before they found mine and it was because the neurosurgeon who did two back surgeries suspected it and sent me to a rheumy. What they had though was a birth deffect in my spine was actually AS making the spinal canal smaller, or emtremely small according to the surgeons reports after surgery.

It sounds like they are heading in the right direction on yours already. As for the meds only your doctors will be able to tell you when and what they will try.

Brent

You can see if your iritis can swing things in your favor. I had iritis/Uvitis for a year. They finally gave me Humira to get rid of it. It took a weekly dose to clear it up though. In my favor was the fact that no other treatments works, I am allergic to steroids, and I am a steroid responder.

Tim

hiya,

the criteria for AS and Spondyloarthropathy are similar, night time pain stiffness etc difference is AS has dammage and ankylosis fusion.

Spondyloarthropathy I see is now often desribed as PreAS, early AS leads to AS.

Search on modified New Criteria for AS and the Eular Criteria for Spondyloarthropathy.

Testing positive for B27 is not the big diagnosis point in AS and spondyloarthropathy it once was. B27 disease can be harder to diagnose as paterns can be sacral ilitis and shoulders/neck leaving the lumbar spine relatively mild.

I do n't wish anyone to harm themselves but one of the diagnosis points is nsaids help and you return to the old state on stopping them. also Spondy diseasse flares with lots of activity as well as lots of inactivity, so you can worsen your self easily.

The nuclear bone scan is useful, MRI is another diagnostic for AS/SpondyA especially early on. Alot of us who do n't present with fusion on X rays often have a rough time of it. It can take years for that damage to occur and you have a painful rough time of it.

Good Luck,

Dabe

hi davo,

thanks a bunch for the advice and info. problem is, i take NSAIDS...but they just don't seem to work much at all. i do everything i can for this pain, and i really can't tell what it is that causes flares and what doesn't with me. seems like everyone is always trying to figure out what causes flares in themselves.

i will at some point try the LSD, but can't now or while breastfeeding, as i've only gained 9 lbs so far (am over 7 months along), and plan to breastfeed as long as possible (and you need about 2500 calories per day while breastfeeding)....don't see how i can gain weight or not become skin and bones on the LSD at this time in my life. also can't take many meds while breastfeeding, i know.

ugh! so many catch 22's, seems.

this is what i'm trying to avoid....going through years and years of pain and suffering for no good reason. i truly believe i've got AS (although was in denial for a long time). i feel like it's so ridiculous and sad to wait until enough damage has been done to be seen on an xray. plus, the chiros HAVE seen the damage.

my rheumy is a very nice man, although he's not very thorough and doesn't communicate very well. but he does seem like the type to listen if i am persistent (i demanded steroid injections, and by golly, i got steroid injections, and however many i felt i needed). he's just a little passive, i guess.

well, i'll talk to him more about all of this. when i recently told him i was now feeling stiffness and pain up in my ribs and in my hips, he seemed alarmed and said we need to stop the spread of whatever is going on, so we'll do a full workup once i have my baby.

thanks everyone, for your support and input. Sue, i hope they find out what's going on with you, too.

deanne

Deanne,

I remember my first steroid shot in my left hip in my late 20's. The doctor said this is going to hurt as he stuck the needle in then pulled it back and forth hitting different areas. He asked if it was hurting and I said with the pain I have been in all I can feel is a little warmness and some relief. He was amazed it did not hurt and so was I.

The rib stuff could be costochondritis or tietze syndrome you can look them up on the net for info. A lot of people with AS suffer from one or the other, it is one of the extras we tend to get. Stiffness, loss of expansion, cramps, etc.

Good luck on your quest,
Brent

i just wanted to add to dave's comments:

1. "Spondyloarthropathy I see is now often desribed as PreAS, early AS leads to AS."

I've read that in a lot of places too.

2. "I don't wish anyone to harm themselves but one of the diagnosis points is nsaids help and you return to the old state on stopping them. "

I found this paper very useful:

From:
Joint Bone Spine
Volume 71, Issue 6, November 2004, Pages 557-562

Title:
Spondyloarthropathy with entheseal pain. A prospective study in 33 patients

Authors:
Bertrand Godfrina, Laurent Zabranieckia, Valérie Lamboleya, Frédérique Bertrand-Latoura, Nicolas Sansb and Bernard Fournié, ,

Abstract:

Objectives. – To identify objective features individualizing spondyloarthropathy with isolated entheseal pain and distinguishing this condition from fibromyalgia.

Patients and methods. – Thirty-three patients presenting with entheseal pain were studied prospectively. The diagnoses were psoriatic arthritis in six patients and ankylosing spondylitis in seven patients; among the 20 remaining patients, in whom entheseal pain was the only symptom, 11 responded to nonsteroidal antiinflammatory drugs (NSAIDs) and were diagnosed with entheseal spondyloarthropathy whereas the nine unresponsive patients were diagnosed with fibromyalgia. A physical examination, laboratory tests, plain radiographs, and radionuclide scan and resonance imaging (MRI) scan of a painful enthesis were done in each patient.

Results. – Among the 11 patients with entheseal spondyloarthropathy, two experienced inflammatory joint symptoms during the 4–6-month follow-up and three patients had radionuclide scanning and MRI evidence of entheseal inflammation similar to that in nine patients with definite spondyloarthropathy (ankylosing spondylitis or psoriatic arthritis). The feature that best discriminated between entheseal spondyloarthropathy and fibromyalgia was responsiveness to NSAIDs.

Conclusion. – These preliminary data suggest that isolated entheseal pain may indicate spondyloarthropathy in some patients. The imaging methods used in this study lacked sensitivity for enthesitis, which may therefore have been missed in some patients. The development of bone and joint ultrasonography may provide additional insights into the entheseal abnormalities present in patients with isolated entheseal pain.


Unfortunately for me, I can't take NSAIDS because of my stomach, so I can't do the experiment on myself, which is really unfortunate because with my symptoms, maybe that is all i would need for now. But for those who can take NSAIDS, it might be that simple? For those of us who can't take NSAIDS, I've been very interested in what else is available.

Thanks Dave,

Sue