[full of it]

nothing yet

Posted in Uncategorized by susieyarbs on September 23, 2009

let’s start at the start.

my elbow hurts.  ouch!  it hurts for a long time, until my husband says, “stop being a baby and go to the doctor.”  i also have to go to the doctor to get a vaccine waiver for school, explaining why i never got my second MMR shot (the first resulted in uveitis, which recurred when i was 12), so i think ok ok, i’ll mention the elbow.  i talk to the doctor (rather, the doctor’s FNP), and alarm bells start a-ringing in her brain.  here’s your vaccine waiver, now please go see a rheumatologist immediately.  i go to the rheumatologist, who says well, you know, doesn’t sound like RA to me, but let’s do some bloodwork to make sure.  here’s some naproxen and come back in two weeks.  in two weeks i go back and good news!  everything came back negative!  and wow!  this is so much better!  keep taking the naproxen and come back in two more weeks.  two weeks later, hmm.  worse again.  go see an orthopedist, because this looks like trauma.  i go to the orthopedist, he says goodness, sure looks like structural damage.  let’s do an mri to make sure.  after the mri (three weeks after…), he says you know what, you don’t have structural damage and this kind of synovitis means either rheumatoid arthritis or an infection.  you don’t have an infection, so you have RA.  synovectomy, methotrexate (the chemo drug? yes, the chemo drug), joint replacement surgery, etc. go back to the rheumatologist.  so i cry and cry, thinking i have a degenerative disease that is going to require me to be on immunosuppressants my whole life and if i’m really lucky, i won’t need a joint replacement when i’m sixty.  i make plans to see the rheumatologist (can we please call him a rheumi?), and in the meantime i consult to the internet who tells me lots of things.  like how RA almost always presents in small joints first, and always occurs bilaterally.  also how 15-20% of people with RA don’t have any blood markers for it, so it is a purely clinical diagnosis, meaning my original bloodwork with the rheumi meant pretty much nothing.  but there are also LOTS of auto-immune diseases out there that affect joints, so who knows, anyway?

which leads me up to today, when i go back to the rheumi.  he won’t say anything as far as a diagnosis, not even no i don’t think it’s RA.  he says that most of the time RA is diagnosed retrospectively, after they’ve found a drug that helps the problem.  this doesn’t comfort me even a little bit.  naproxen didn’t work, so now we do cortisone and celebrex.  we also re-do the bloodwork and add a chest x-ray.  if cortisone and celebrex don’t work, i go back to the ortho and he sticks a camera in my elbow and cleans out the debris.  if all he sees is inflammation and still can’t find a physical root cause, then we start drugs.

it’s quite frustrating.

i, personally, think tiny little aliens have taken up residence in my body and my elbow is their living room. possibly the kitchen.

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