Diagnosis Jitters

Now that the clock is ticking down on my appointment with the rheumatologist now that the fabulous Dr. H has sent my referral, I've been trying to think through what's going to happen next week when I meet with this new guy, whom the fabulous Dr. H says is really damn good.  He's obviously going to want to run more tests, as I have not had my complement levels or anything like that done.  But will he go ahead and tell me that I have SLE?  That's the question.  I've spent a lot of time over the last few days trying to figure that out.  

Okay, so the American College of Rheumatology set up eleven criteria for diagnosing someone with SLE.  Usually, depending on which ones you have, you only need four for your doctor to make the diagnosis: 

1. Malar rash: butterfly-shaped rash across cheeks and nose
2. Discoid (skin) rash: raised red patches
3. Photosensitivity: skin rash as result of unusual reaction to sunlight
4. Mouth or nose ulcers: usually painless
5. Arthritis (nonerosive) in two or more joints, along with tenderness, swelling, or effusion. With nonerosive arthritis, the bones around joints don’t get destroyed.
6. Cardio-pulmonary involvement: inflammation of the lining around the heart (pericarditis) and/or lungs (pleuritis)
7. Neurologic disorder: seizures and/or psychosis
8. Renal (kidney) disorder: excessive protein in the urine, or cellular casts in the urine
9. Hematologic (blood) disorder: hemolytic anemia, low white blood cell count, or low platelet count
10. Immunologic disorder: antibodies to double stranded DNA, antibodies to Sm, or antibodies to cardiolipin
11. Antinuclear antibodies (ANA): a positive test in the absence of drugs known to induce it. 

So, in general, you only need four, and you should have more than one symptom at a time, if I understand things correctly, and some symptoms are more symptomatic than others.  Which ones have I had?

4.  Mouth or nose ulcers: usually painless
5.  Arthritis (nonerosive) in two or more joints, along with tenderness, swelling, or effusion.
6.  Cardio-pulmonary involvement
11.  Antinuclear antibodies (ANA)

 But those are the only ones I know I've had without any other explanation.  To be honest, I've had #9,  a funny liver enzyme test (while I was having gall bladder attacks) and I had #8,  protein in my urine (when I had the worst bladder infection in the world.)  Both of those, however, might have a perfectly logical explanation, as listed before.    

In addition, I have been treated 2-3 times for what everyone has assumed were patches of ringworm on my forearms.  As it turns out, those patches look a LOT like discoid lesions, and we treated them with steroid cream and they went away.  So, have I had symptom #2?  Maybe. 

So, it really is a judgment call.  I can't tell what my rheumatologist is going to decide based on my chart and if he thinks my canker sores are enough to count as a symptom.  It's going to come down to the bloodwork, I think, and what he makes of that weird lupus antibody test I had.  It didn't come back positive for any of the hallmark antibodies mentioned in #10.  But I did have anti-centromere antibodies. 

So much for trying to out-diagnose the rheumatologist.  I'm just going to have to sit tight and hear what he says. 

Waiting

Waiting, waiting, waiting.  Oh, suck.  

Right now, I'm stuck in a holding pattern on my blood tests.  My doctor, the fabulous Dr. H, decided to pull a lot of blood for a battery of blood tests she knows my rheumatologist is going to want anyhow, so she's ordered them at student health so I don't have to pay out of pocket.  She ran a series of things checking for protien in urine, thyroid problems and muscle inflammation, but the most important is the lupus antibody series looking for anti-DNA, anti-SM and anti-RMP.  That one takes several days to process, so I knew I wasn't going to get the results back until sometime this week.

The big problem, however, is that Dr. H. was going to be out of town after Tuesday, and I didn't catch her in time after she called me with the results, so I'm waiting until my appointment first thing next Tuesday to get the results that have been sitting in my patient file since Wednesday afternoon. I'm not a patient person by nature, and the anticipation is killing me. 

Se gave me a call before she left to keep me updated:  "I just wanted to let you know that the blood tests we ordered were mostly quite good, and I wanted to talk with you in person about the results."  The last time she pulled that "mostly good" garbage was when all my tests came back clear except for the ANA.  Well, damn.  In addition to being a little impatient, I can be a little paranoid.  In my mind, the one that isn't clear must be something in the lupus antibody series.

I ran by the student health clinic to check on the results Wednesday afternoon, and one of the nurses came back to check on me after consulting my chart.  "Dr. H. said she left you a message, and to make an appointment for next week when she's back in," the nurse said.  Then she sort of paused and gave me a funny look.

"Besides," she added cautiously, "... If it were me, I think I'd want to talk to somebody about my tests in person.  Don't you?"  My mind started racing.  The paranoia, as far as my mind was concerned, had just been confirmed.

"Um... sure," I answered, and I made the appointment for the following Tuesday. 

I only have two more days to wait, so here's hoping I can sit on my hands a little while longer... and they don't go numb on me again while I do...