I’m an Idiot

What a difference the doctor makes!

Yesterday was my follow-up appointment with my new rheumatologist.  Wow!

To start with, I had to fill out an ACR patient assessment form while sitting in the waiting room (had I known that, I would have arrived early – my former rheumy didn’t do that).  I asked for a blank copy so that next time I can have it completed ahead of time, which the receptionist thought was a great idea.

The doctor started off with, “You’re probably wondering about all those tests.”  I told her that I’d gotten a copy of the results (a grand total of nine pages by the time all the results arrived), was pretty happy to see the CCP back in normal range, and had looked up the tests that were abnormal.  “Good for you,” she replied, then went over all the tests:

  • CCP doesn’t usually fluxuate that extensively – it’s possible that the first lab made an error
  • Gluten-intollerance tests were normal (I don’t think I’d had any wheat for a couple weeks before that blood draw; apparently I should have mentioned that to the doctor – she says the test doesn’t show a reaction against gluten if you haven’t had any gluten)
  • Lupus tests were negative
  • Blood cancers negative
  • Chest and spine x-rays looked good
  • Some immunosuppression evident, but follow-up tests were low-normal
  • C3 low

With my CCP no longer elevated, she doesn’t want to call this RA.  For insurance purposes, no label until there’s a definite diagnosis.  This is very weird.  Change doctors and get a different dx.

I have felt so much better the past couple months, and that seems to be reflected in my lab work.  I thought I was even going to get to discontinue my meds, but after a discussion of the placebo effect, my rheumy is inclined to think that the DMARDS really are helping (it took a couple months on them until I felt any improvement).  Instead of discontinuing them, she increased my sulfasalazine.

She pays attention, and wants to solve this puzzle.  I need to make an appointment for an MRI to figure out what’s going on with my achilles tendons.  At last!  The first time anyone touched my achilles tendon, I nearly went through the roof – that was nearly two years ago.  The former doctor just said, “Hmmm, that’s not usually a tender point,” and moved on to the rest of the exam.  I really appreciate this new rheumy trying to find out what’s going on.

The bizarre tingling that I’ve assumed was a side-effect of plaquenil is not.  She thinks it’s most likely related to my neuropathy and wanted to write me a referral to a neurologist.  If there’s nothing that can be done about it, I don’t want to see yet another doctor.  But if there is something that can be done about it…  hmmm… I might have made a mistake.

So there you have it:  proof that I’m an idiot.  Two months ago I declined a referral to a podiatrist; yesterday I declined a referral to a neurologist.  I’m regretting both of those choices.


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