A New Rheumatologist and My Burgeoning Abandonment Issues

Hello my silly readers!

I promised you so so so much catch up, but before we get to the fun juicy stuff, I have to tell you all the boring deets about my last rheumatologist visit. Don’t I have a fascinating life?

In January, my rheumatologist left the practice and I was assigned a new one AGAIN. At first I was like “NONONONONO! Why does everyone leave me!” It took me ten seconds to suppress these growing abandonment issues that sprout up every time one of them leaves. I am usually optimistic that the next doctor is going to be “The One.” I always have high hopes that I’m going to serendipitously stumble into a doctor who’s open to alternative health like some kind of rom-com for sick people.

For our first appointment together, I went in with a giant swollen hand that was a Screen Shot 2016-06-25 at 12.43.43 PM on the Wong-Baker pain scale.* One knee, the opposite hip, and my neck were all pretty destroyed at the time, too. The doctor seemed really open to a rediagnosis because I was like, “Dude, some of these symptoms are NOT ankylosing spondylitis symptoms,” and he was like, “Dudette, let’s explore. I think it might be psoriatic arthritis.”

And thus, I embarked upon a ton of new blood work, starting from the ground up. The phlebotomist took vial after vial after vial from me, and I kind of wanted to feel woozy so she’d give me a cookie, but no dice. I was strong and virile, and she was a stingy vampire.

When the blood work came back, it revealed…

NOTHING. Like a black hole of insight.

1-1230634165FAXt

Ladies and gentlemen, the breadth of knowledge gleaned from my blood work.

I went in to the office with real actual joint pain in my giant, swollen hand (not a typical AS symptom, hence the retesting), yet my inflammation markers took on a Fran Drescher voice to say, “Woooowww, you look fantaaaaastic. Move alooong.” And this was me:

liar

I actually decided to wear makeup that day!

I was tested for Lyme disease, too. They used the Western Blot test, which separates the antigens into bands that are compared to banding patterns in known cases of Lyme disease. The only band that appeared was an insignificant one, and they only recognize Lyme disease if there are 5 bands present. There’s controversy over whether or not the Western Blot is accurate, but I feel it’s safe to assume I don’t have Lyme.

One fun new bite of information is that I tested positive for the HLA B27 gene. I’d never been tested for HLA B27 upon my original diagnosis. It’s a gene that may (or may not) indicate (or not) the presence (or absence) of ankylosing spondylitis (or something else entirely). The reason I was never tested for it before is because of the complexity of the previous sentence. Basically, it means nothing.

The HLA B27 gene is found in many people with AS and also those without. It’s also NOT present in some people who have AS, so I don’t put much stock in it.

This post is getting BORING AS HEEEEELLL, so I’m going to speed up some other results: Negative on rheumatoid arthritis, normal inflammation markers even though my right hand looked like a giant steak that could have fed three grown adults.

There were also urine tests, and the biggest insight from those results was this hidden compliment:

SOURCE: URINE, CLEAN CATCH

Thanks. I’ve been practice my technique.

But there was one surprise, dear friend. Read on!

You won’t BELIEVE the SHOCKING ending of THIS LAB TEST!!!!

That kind of headline seems to work for a lot of shitty websites, so I thought I’d try. When I was originally diagnosed, the conclusion was reached based on speckled ANA (antinuclear antibodies).

But in an unexpected twist of fate, this time, my ANA came back NEGATIVE. Pause for dramatic effect. How is this possible? Those babies are not supposed to go away. They’re like your microscopic battle scars, showing all the crap you’ve made it through alive. What happened to my scars?

There are reports that in conjunction with certain immunosuppressant treatments, ANA and other individual antibody levels may decrease but rarely become negative.

While the Humira could have lowered the ANA titer, it’s unlikely that it would have eliminated the ANAs. It could mean the lab effed up. It could mean I’m super woman. It could mean a lot of things. It could mean paleo is working (even though I wasn’t being very strict about it). It could mean I was misdiagnosed. It could mean I’m an alien.

When I asked my rheumatologist, he said, “Huh. Yeah. I don’t know. Try this methotrexate.” Sigh. So much for knowledge is power.

knowledge_is_power-1024x576

Dear god no. Screen Shot 2016-06-25 at 4.06.04 PM

I’ve tried methotrexate before, but I was taking it daily. He assured me that taking four pills one day a week and adding folic acid would reduce the side effects of feeling like a giant shitball, so I went, whatever, I’ll give it a shot.

Here’s a little foreshadow for the next post: I felt like a giant shitball. Details to come.

‘Til next week, my little pincushions!

Katie

 

*Can we make Wong-Baker a verb? Like “OW! I just Wong-Bakered the crap out of my knee.” “Man you really Wong-Bakered yourself. You ok?”

Wong

4 is my standard resting face.

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One thought on “A New Rheumatologist and My Burgeoning Abandonment Issues

  1. I tested neg on Western Blot. Had positive ANA with speckled pattern. Finally went to an LLMD after multiple diagnoses of everything there is to have and a blood test was sent to Igenex. I came back CDC positive for Lyme disease (over a year after the neg western blot) after two years of antibiotics my ANA went back to negatory! My Lyme dr said he had seen that happen plenty of times. Fast forward about 7 years. Symptoms slowly coming back and now being told I might have Lyme induced autoimmune disease. Ankyloosing Spondylitis. I moved out of state so no Lyme dr to be found.

    Like

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