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About six weeks ago, my jaw started hurting. Just the left side, and intermittently. It happened mostly when I forgot my medication or towards the end of the shift when it starts to wear off. I talked to my rheumatologist a bit when I was in, but he suggested that I go see the dentist, just to rule out the obvious simple causes.

It's gotten worse, though. I can't bite down all of the way without a lot of pain, so chewing food completely is almost impossible. There is a popping feeling when I force my mouth to close that far, it seems like things are super tight/swollen on the left side. It's constantly at a low level of pain right now, which worsens as my medicine wears off.

I finally went to the dentist today. They did a panoramic x-ray and looked at it... but nothing is obviously wrong. No teeth are impacted, out of place, or otherwise problematic. They are only partially erupted, but it has never caused me any issues before, certainly not pain that feels like it's up where the muscles for my jaw are -- not down by the teeth.

Anyway the dentist looked at everything, shrugged, and said "well, I recommend you see an oral surgeon to get the wisdom teeth out". The logic is, of course, that if there are problems this is the most likely cause and hey, you don't need wisdom teeth anyway might as well rip them out...

This puts me in a dilemma. I've now messaged my rheumatologist to ask for his advice. I don't want to have invasive teeth removal unless it's necessary (it's painful and expensive!) but it's almost impossible to tell if something is caused by ankylosing spondilitis -- it's "diagnosis by exclusion" as Ari put it. We have to rule everything else out before it is "probably" AS related.

I'll keep you posted in the Saga of Mark's Health...

P.S. the knee thing went well. He drained another 120cc of synvoial fluid and gave me a cortisone shot. It seems to be doing the trick, the joint hasn't swollen back up and seems to be operating just as well as it always has.
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May. 23rd, 2011 09:02 am

oh, sad.

zorkian: Icon full of binary ones and zeros in no pattern. (Default)
And to add: I was somewhat disorganized this morning and I brought my Google windbreaker, not my jacket. My medicine (the travel container I use) is in my jacket, so I do not have my morning medicine.

I really should keep a back-up stash here at the office so on days like this I can do something and not just helplessly shrug and prepare to endure.

Alas, today will be painful.
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My knee issues continue. The doctor drained it last time (ugh!) and that was great for about a week. Here it is two weeks later, though, and it has swollen back up worse than it was the first time. Big, angry, painful. It hurts to walk, let alone climb/descend stairs.

Dr. Rozelle has been very helpful, though, and was even willing to stay after hours yesterday to help me. Unfortunately I can't get out of San Francisco at the drop of a hat, so I had to put the appointment off until Thursday. When I go in, he's going to drain the joint again and this time add a shot of cortisone, a steroid anti-inflammatory.

To be honest, I wish my body would stop breaking. It's kind of annoying to realize that I'm not even 30 yet and I'm having these kinds of issues. Three years ago I didn't have any problems and I had very little empathy for people with pain issues. Now I'm beginning to understand, and while knowledge is good, I kind of liked ignorance. (Can I admit that?)

Ah well!
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Ankylosing spondilitis isn't just a neck and back problem, apparently. About three months ago my right knee started to act up. It progressively got more and more painful and swollen, to the point where as of yesterday I couldn't stand up from a sitting position very well, and kneeling down was like fire and brimstone.

Today I went in and saw my rheumatologist and he looked at it and went "oh wow, that IS swollen!" Great! I'm not making it up! Then he told me he wanted to drain it. Oh boy. A bit of numbing action later, he made a withdrawal -- 100cc of synovial fluid later, he told me he was going to choose not to hit me with a cortisone shot, but to make a followup appointment for 4-6 weeks so I could come back.

If it recurs, he's going to put me on some sort of DMARD -- probably sulfasalazine or methotrexate. This is unfortunate, I don't want my condition to worsen, and the side effects don't really sound like fun.

My knee feels less painful, but pretty funky. I expect the muscles and ligaments are all trying to get back into their proper positions now that so much fluid was removed. I didn't feel up to driving to the city today, so I'm working from home.

Well, good times.
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zorkian: Icon full of binary ones and zeros in no pattern. (Default)
Okay, now for the big one.

The very short story: I've been diagnosed with ankylosing spondilitis (AS), an autoimmune disorder akin to rheumatoid arthritis. In other words, my immune system apparently doesn't like my joints and has been attacking them causing inflammation and pain.

The much longer one (but still hopefully not into TL;DR territory):

It started two to three years ago (I didn't keep records so I don't really know) and has been gradually worsening. Initially I was able to just live with it. Then I started taking ibuproven (200mg) most nights to sleep better. Then it was every night. Then it was 400mg. Then it was night and day. Then it was 600mg.

Sometimes I would be pretty pain-free. Other times I would hurt so bad after waking up (or after sitting for long periods, i.e., right before I went to bed) that I would not be able to get myself out of/into bed without asking for help or accepting severe pain. Sometimes I could not roll over. Eventually I was waking up 5-6 times a night, every night, because I'd try to roll over and it would jerk me awake with "oh god, ow".

(I never posted about any of this, I don't think, and I don't intend to make a habit of it. I'm just getting this out here for the record so I can look back later.)

Janine was trying to get me to see the doctor for a long time. She tried helping me -- different bed positions, different pillows, massage, chiropractor, moral support, everything. I was stubborn, though, as I tend to be, and didn't want to go in.

It has finally (in the last two months) gotten to the point where it's seriously impacting my ability to live normally. Walking has been painful for at least a year, but in the past two months it's gotten to the point where the mere thought of walking more than a block or two is almost terrifying. Walking hurts and it makes me a drag on groups because I try to pick activities that don't involve much movement and a lot of things just aren't like that.

Anyway. I finally went to the doctor.

I first saw my normal primary care physician. After explaining the symptoms, he said that it sounded like something that would best be served by talking to a Physical Medicine specialist. Someone who is also an Internal Medicine doctor (like Dr. Jha, my PCP) but specializes in things like back pain, etc. He also prescribed Relafen (nabumetone) since I told him that ibuprofen was my lifeline. It's a similar drug, just stronger.

He then ordered some blood tests and some x-rays of my neck and spine and pelvic region so that they would be available when I went to see the next doctor. The blood tests revealed some elevated things (C-Reactive Protein and Erythrocyte Sedimentation Rate) and low Vitamin D.

Next week I saw Dr. Wu, she looked at my x-rays and the blood tests and went through my symptoms again. We talked for a while and she said that it sounded like I might have a condition called ankylosing spondilitis (AS), but she wanted to order some tests and get an MRI of my sacroiliac (SI) joints as that's where AS tends to strike first. Given I was having pain with that particular area, this made sense to me. She prescribed gabapentin and cyclobenzaprine as additional things that could help with the pain.

We did more blood tests and the MRI. I came back positive for the protein HLA B27. This particular protein is strongly associated with AS. Approximately 90% of people with AS are also positive for this protein. It's not a sure bet, though, as something like 5% of all white people have this protein -- even if they don't have AS. But it was enough for her to refer me to see a rheumatologist. I did the MRI.

Today I got in to see Dr. Rozelle, the rheumatologist. He went through the various tests, my x-rays and MRIs, and then did some physical range of motion and pain tests on me. Afterwards he spent a while explaining arthritic conditions and drilling down to AS in particular. I was a little mentally crashed so I didn't really ask any questions (should have), but he's pretty sure of the diagnosis. There's no 100% true way to test for AS -- but the symptoms and test results are pretty damning:

* Elevated CRP indicating high rates of inflammation in the body.
* Elevated ESR indicating the same thing.
* Presence of the HLA B27 protein.
* Inflammation in the SI joints (shown in the MRI).
* The pain starts when I haven't been moving and gets better with motion (unless that motion is walking which seems to irritate the hell out of it).
* AS typically presents in males aged 20-40.

Yeah ... everything is spot on for the diagnosis, but there's no "you have X, therefore you have AS". All they can do is infer based on all of the data. I'm a pretty scientific/data oriented person, and I have to agree with this particular thing... as much as I don't want to be 27 and have an autoimmune disorder that (at best) I have to manage with medication for the rest of my life or (at worst) disables me with nothing I can really do.

The doctor ordered some more tests, a chest x-ray and some more blood tests to look for various types of infections and viruses. He is checking to see if I have anything particularly bad before we look at the treatment options. For now, he prescribed indomethacin (a stronger NSAID to replace the nabumentone).

The treatment he would like to pursue (pending on the above tests coming back) is to use a class of medications called biologics. In particular, Enbrel and Humira -- tumor necrosis factor (TNF) inhibitors (antagonists). These cause immune system response suppression, though, so they make you more likely to get something.

So. That is that.

My emotions are running pretty rampant right now. I don't even know what to think. Couple this with the situation my mom is going through and I'm pretty touch and go right now.

But it's bedtime, and that means snuggletime. My favorite time.
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