Hello all,
Thank you for all of your responses to my last email. I really appreciate all of your love and support. Most of you asked that I keep you updated, so here's the latest (it's long again, sorry):
First, good news! I had an MRI on Friday, and the results were encouraging. I don't have a lot of inflammation showing up, which means that I have time and options, rather than rushing straight into aggressive treatment right away. What a relief! I definitely appreciate having some time to figure this all out, rather than having to go straight to injections, infusions, and the like. The MRI does show old damage from past inflammation, which is probably the source of a lot of my pain, but my joints aren't "hot" at the moment. My doctor said maybe 1 out of 10 people with this disease would have MRI results like this, so I'm grateful that I seem to be on the mild end of the spectrum right now.
The MRI also showed "degenerative disc disease" in my lower back (lumbar vertebrae 3 and 4, and two other places which I've forgotten by now), which is a separate issue. The name sounds bad, but this term is really just a description of the gradual deterioration of the discs between the vertebrae, which happens to all people with age. Most people have some DDD by age 60. So, I'm just getting a jump-start on the aging process. :) I only talked to my doctor briefly about this (I got all this information during a phone conversation today with noisy kids in the background and dinner burning on the stove), but he mentioned that this can be connected to osteoarthritis in the spine (when the cartilage that cushions a joint deteriorates) and can also cause various degrees of back pain. Sounds like this is a whole different issue, but one that is of less concern, because there's nothing systemic about it, just pain.
I also had an x-ray on my hips, because I've had an increasing amount of hip pain in the last few months. Fortunately, I am not showing any joint damage in my hips, so that pain is probably the result of the peripheral effects of the disease, like inflammation in tendons or bursitis. The lab work I had last week to rule out other things all showed up negative, so nothing new there.
So, what's next: Because the inflammation is not at a point that is a serious concern (in terms of leading to fusion), I will have a lot more control over what we do next, with the goal of just getting my pain level down. I will be starting physical therapy, which could make a significant impact. (I've done physical therapy for an extended period of time twice in the past, but now that we're working from actual information about what is really going on, I'm hopeful that this time will be different.) In terms of medication, I have been taking naproxen (Aleve) twice a day for several years, but that hasn't kept the pain down enough. While we were waiting to see what the MRI showed, my doctor recommended that I double the dose of naproxen I was taking. So, I have been doing that for the last week, but unfortunately, it hasn't made an impact on my pain level, and it has been upsetting my stomach (a common problem with non-steroidal anti-inflammatory drugs, NSAIDs). So, the next level of medication I can try is a more powerful NSAID, piroxicam, which is also supposed to be a bit gentler on the stomach. I'll try that, along with the physical therapy, for about 4 weeks, and we'll see if that makes a real impact on my pain level. If not, then we'll step up to a more powerful medication. It sounds like it will be a balancing act (both in the short-term and in the long-term), trying to find something that controls the pain and inflammation without giving me problematic side effects. Glad to be able to start at the bottom though, rather than jump right to the top. I've got plenty of years to get there. :)
Anyway, that's the medical side of things at the moment. If you want more info on the emotional/personal side of this (it's been a long week), and what I've learned about AS so far, I'll probably send an email about that soon. I wanted to get this part out to you all right away, in case anyone was waiting to hear from me (Mom...).
One more thing before I sign off - I can't believe I missed the opportunity to mention this in my previous email, but did anyone notice how much this disease sounds like the name of a dinosaur? Ankylosing Spondilitis/ Ankylosaurus... see? In case you can't pronounce these words, feel free to call it my "dinosaur disease" - That's what we've been saying around here. And, as my sister Anne pointed out, if I end up with a fused plated back, this will definitely offer me additional protection against tyrannosaurus. So, that's an added bonus. :)
That's all for now. Thanks for all your love and support!
