Monday, September 20, 2010

went to see a rheumatologist today

After a 2 month wait, I finally had my appointment with a highly-recommended rheumatologist today. I was pretty impressed with the initial visit. He spent a lot of time taking down my history, asking questions and generally just listening. I liked that he paused for a bit and asked "so, what do you think you have?" It's nice to see a doc that actually values his patients' opinions, and doesn't immediately write you off as a nutcase or hypochondriac because you've been researching your own symptoms online.

He ordered a ton of bloodwork, most of which I didn't understand. I do know that he's testing for Lyme Disease, Rheumatoid Arthritis, Celiac (I asked for that, to see if my TTg level has come down at all since being gluten-free), and Lupus.

He doesn't think I have hyperparathyroidism, because typically you'd see a much higher Calcium level with the severity of the symptoms that I'm having (yes, I'm aware that disputes this). I'm still waiting for the PTH/Calcium/Magnesium test to come back, so we'll see.

He noticed that I had significantly lowered blood pressure when moving from a lying position to sitting up. He's a good doc- he put the cuff on and then distracted me, all the while taking note of my BP and I was none the wiser until the end.

He also noticed something funny about the coloring of my fingernails, and my cold hands. He pegged this at a "1", on a scale of 0 to 4 with 4 being the most severe. Unfortunately I don't recall the exact meaning of this... something to do with RA I think.

He said that Lupus can sometimes cause a false-positive for Lyme, which may explain why I tested positive for Lyme a few years back, but never showed any improvement on antibiotics. As far as I know I've never been tested for Lupus; he was kind of surprised to hear that I'd never been tested.

When I asked him what he thought I had, he said that assuming all the tests come back negative, he thinks I have either Fibromyalgia or Chronic Fatigue. I was surprised, since I always felt that Fibromyalgia was kind of a bucket label that they put on patients whose problem they can't really figure out. He said that no, it's a very real, very specific thing. He did note that I didn't have any of the tender points though. He's suspicious of Chronic Fatigue because of my low white blood count.  So all of this is really just speculation as we wait for the blood results to come in, which will take about 2 weeks.

In the mean time, he wants to treat my symptoms, which typically means antidepressants. I'm not too keen on that idea, having spent years getting on and then off virtually every pill known to psychiatry. In the end he sent me home with some free samples of Cymbalta, but no pressure from him to try it. I'm still not sure if I'll take it or not.



  2. Anonymous beat me to it, I was going to suggest the same thing!

    Anyway, I've been following your blog regularly, and hope you get to the bottom of this! Being sick is NO fun.