Posted by: Kate | May 15, 2009

May your Spondylitis Never Ankylose

…and mine, too, for that matter.

OK, I have a diagnosis, and – of course – some thoughts about it, so I thought I’d try and organize those thoughts and share my private, personal medical information with random strangers all over the world.  Because I’m secretive and shy that way.

The official diagnosis: undifferentiated spondylitis.  Not ankylosing spondylitis, at least not yet.

Spondylitis is, essentially, spinal arthritis.  It’s in my very lowest spine – lumbar and sacroiliac regions, which means starting at my waistband (I wear, for reference, Old Navy “Sweetheart” jeans, so they’re low-rise but not really, really, “please drop a quarter in this slot to continue your phone call” low) and continuing down to my tailbone.  It’s visible on x-rays and MRIs, all of which have happened since January.  More evident in the facet joints; the ones around the side of the spine.  I have three bulging discs, and have been told not to expect this ever to get better.  (This is rather a big deal, coming from my “I want them to cure all of your migraines!” primary care physician.)

Not a fantastic diagnosis, perhaps, especially given that prior to about September of last year, I never had any reason to suspect that I might have serious back problems to begin with.  The occasional fall-and-ouch, sometimes random twinges, but I hadn’t had regular, consistent pain for no apparent reason.  Then the word fell apart, so it took me until January before I realized, “Hey, this hurts every day, to the point that I’ve started taking migraine medication for it.”

So, spondylitis.  But not ankylosing spondylitis, which is a good thing.  Ankylosing is the process by which the arthritis builds cute little bridges from vertebra to vertebra and, over time, fuses the whole damn spine in place.  Which means “limited flexibility,” as they say in medical terms, a polite little euphemism for “stiff as a board,” and “brittleness,” which means, “able to break your spine by stepping too hard off a curb.”  Good stuff, huh?  Glad I could give you something to look forward to, a new goal to add to your list of 100 things to do before you die.

I’m at a heightened risk for AS, for a couple of reasons.  First, it is an autoimmune reaction, lumped together with lupus and rheumatoid arthritis and various other autoimmune fun and games.  In 2007, I had strep throat for the first time in my life, and it ended up developing into an autoimmune reaction of its own: erythema nodosum, because God forbid we just give things normal, pronounceable names.  That went away, but having had one autoimmune reaction makes me somewhat more likely to have another, next time I get good and sick.

And second, my uncle – my mother’s brother – has full-blown AS.  He’s on full medical disability in his mid-40s, uses a scooter, and so on; either he’s really good at faking and has fooled any number of medical experts, or he’s actually in an unreasonable amount of pain.  Having a close relative with the disorder makes me more likely to develop it.  Don’t you just love genetics?  And here I thought I would be all done with genetics after I finished making little Punnett squares and realizing that, if I did come out with a blonde-haired, blue-eyed baby, Willem couldn’t automatically assume I’d been spending too much time down at the skateboard park.

Speaking of genetics, my third risk factor is a positive blood test for a gene called HLA-B27, which does not 100% mean that I will develop AS.  If I understand it correctly, 8% of the general population tests positive for the gene.  Of that 8%, about half get some form of spondylitis, and something under 10% actually get the full-on AS diagnosis.

The best they can tell me, then, is that right now, I’m not showing any evidence of fusion in my spine.  The plan is to continue treating with NSAIDs (ibuprofen, for me, because the others I’ve tried just haven’t worked all that well, which means, at all) and stronger pain medication as needed (Ultram/Tramadol, for me, because I’d like to hold off the use of heavier narcotics until I really need them – since this disorder will only get worse with time, I’ll eventually build up a tolerance, need higher/more frequent doses, and then will need to step up to a new medication).  Once a year, I’ll have a new MRI, to track any changes (the fact that I’m not showing fusion now doesn’t mean I won’t start tomorrow – but, for now, it’s just-plain spondylitis, not ankylosing).  And next week, I’m going in to have a local anesthesthetic injected into four spots on each side of my spine to try and numb out the nerves a bit.

It’s survivable.  It’s not the best-case scenario (“We realized that it’s not a spinal issue at all… just change the brand of shampoo you use and you’ll be all better.”) but it’s also not the worst-case scenario (“You have started to fuse, and should expect to be in constant and severe pain starting… now.”).  Now I know what to watch for, and I know what types of doctors to see… the pain clinic for the anesthesia, and a rheumatologist for the autoimmune bit.

I’ll take survivable over the alternative, any day.

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Responses

  1. You’re in my thoughts – even a not-so-bad diagnosis can be a shock to the system. HUGS.

  2. My husband had the facets injections into his neck, and they did help. The first round eased his pain for almost a year. I hope you similar success.

  3. Aw, damn. I was rooting for the ‘shampoo’ one. But you’re right, I’d take ‘survivable’ over the alternative any day. Bad health news will come to us all someday; I just hope I’m able to be as philosophical about it as you are being. THAT’s the best-case scenario.

  4. At least you now have a diagnosis and can go from there – instead of being left in the “wondering” category.

  5. Yep, must be some comfort in knowing what it is. My back is still sore and frankly I’m a little afraid to have it ‘explored’ further than some regular physio.

  6. back problems suck monkey balls, I’m sorry 😦

  7. I’m sorry to hear about your diagnosis but I wanted to make sure that you’re aware of an organization dedicated specifically to those suffering the effects of spondylitis.

    The Spondylitis Association of America (SAA) is the only non-profit organization in the US dedicated to improving the lives of people with ankylosing spondylitis. Formed in 1982, SAA is committed to increasing awareness of spondylitis, providing information and support to all those affected, and ultimately, working to uncover a cure for the disease.

    SAA’s mission is to be a leader in the quest to cure spondylitis and to empower those affected to live life to the fullest.

    Resources are available — including books, DVDs, brochures and publications, an 800 page website with interactive message boards, a quarterly, advertising-free news magazine, and a tight-knit community of people who understand the daily challenges of living with this chronic illness. For more information, feel free to contact me or visit http://www.spondylitis.org.

    Diann@SAA

  8. So sorry to hear of your diagnosis. I was diagnosed with AS in 1998. I had severe fusion, mid back fused within a year’s time after an automobile accident. I was able to put it back into remission and have for the last 10 years. I wish you much success on stopping the progression…it can be done.

    My best,
    Stephanie

  9. Stephanie,

    May I ask what led up to remission?

    Thanks,
    Stacey

  10. Hi Stacey,

    I think it was a couple of things. The one big thing was I went on a strict diet to remove the candida in my system. It was taken over and it severely effected my immune system. Once I was able to get that under control my immune system balanced out and I was able to stop the attacks. I had to deal with the pain and still do of the fusion in my mid spine and degeneration in the neck. My attack was so strong that I fused within a year’s time. I believe in a non-starch diet along with being on a candida diet.

    Hope this helps.
    Stephanie

  11. Stephanie,
    Thank you so much for this information! Is there a certain “anti candida protocol” that you followed? Did you have to cut out all fruit? How long? How long did it take for you to begin seeing improvements?

    I am certain that diet is the answer for me (I have always felt better when I avoid certain foods), but I haven’t found the “jackpot” in terms of of pain-free living yet, and I have been trying for four months.

    Thanks (so much!),
    Stacey

  12. You and I sound very similar in a lot of ways! I was originally diagnosed with some sort of Spondyloarthropothy, then they decided PsA, but now they’re back to Undifferentiated Spondyloarthropothy (say that 10 times fast!), with maybe a little RA sprinkled on top. May you remain unfused, as I hope I do!


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