Dang. Has it been a YEAR?

I've been so much in recovery mode that I've completely forgotten about disease blogging for a while.  Boy oh boy, there's a lot to catch up on!

So, I had to drop the blog for a while, as I needed time to actually get s#!t done for a change.  I'm now officially a year behind-er than when I started last fall, but on the bright side, I don't have scabies.  That's an improvement from last year.  :)

On the whole, things have been rough, but going well.  Two of my last three ANA scans have come back as positive for anti-centromere antibodies, and the titer (the measure of how much inflammation there is) was finally high enough to prove that I was having an honest-to-goodness autoimmune reaction.  No, I do not have allergies.  No, I don't need to sleep more.  I'm not (just) depressed.  This is a freakin' REAL autoimmune event, dammit.  So THERE.  

Strangely, when my rheumtologist, Dr. W., told me this last summer, I was disappointed and thrilled at the same time.  Of course I want this stupid thing to just magically disappear.  I want to eat like a normal person and not need a nap after four hours of studying.  At the same time, I felt vindicated.  After the ass-chewing I got when my illness forced me to delay my second field exam, it felt better to know for sure that I wasn't making any of this up.  that third positive ANA was the tipping point.  It meant that my doctor and I could finally talk seriously about treatment for my symptoms.  I've been on a standard dose of Plaquenil now for about three months, and I'm positive I'm seeing improvement. 

As for what we actually call this thing... that's still up in the air.  It depends on which standard you go by.  Based on my symptoms alone, my GP, the fabulous Dr. H., still wonders if I'm in a pre-lupus stage.  In some ways, that's the diagnosis I think I lean towards, too, mostly because there's a comfort in simply being to point to a name and say, "that's the bad man who punched me in the face." 

Based on my blood work, however, my rheumatologist, Dr. W., is leaning towards CREST syndrome.  For some irrational reason, that scares me more than lupus-- probably because I just haven't thought about it much.  CREST syndrome, for those who don't know, is the kinder, gentler form of scleroderma.  Patients have the same problem with hardening tissues, but it's usually limited to the hands, feet and face; other symptoms behave just like most other autoimmune diseases. That's the reason that, whenever I see Dr. W. now, he pinches my knuckles to see if the skin is getting any thicker.  So far, so good. 

The reason he's leaning toward CREST syndrome is because of those pesky anti-centromere antibodies.  You see, each autoimmune disease has a similar profile, but they usually end up with favorite parts of the cell they attack.  For CREST syndrome, usually that "signature" antibody is anti-centromere.  Patients with a consistent presence of anti-centromere antibodies usually tend to get CREST syndrome more than lupus.  Now that it's showed up on two different ANA screens, CREST syndrome looks more likely than it did before. 

But hold on-- not so fast.  Anti-centromere antibodies, it turns out, can indicate other problems as well.  You know, like Raynaud's disease.  And since I do have a problem with circulation, blue fingernails and the occasional attack of "zombie fingers," perhaps my centromere antibodies come from that instead.  And since Raynaud's is often a complication of lupus...  we're back at the drawing board. 

So, at some point, I'll tell you all the interesting things I've learned about living with AI disease, trying to balance graduate school, and being a decent wife to my very, very understanding husband.  But all that will have to come later.  

How well does your doctor know ANA testing?

One of the things I've figured out over the last five years is that most general practitioners don't see autoimmune disease enough to really be up on what the testing means.  I've had an ANA test at least four times, and I was told different things at least three times.  So, one important thing, I've discovered, is knowing the facts about autoimmune testing for yourself so that you know what your doctors are doing and what the results mean.  So, here's a little recounting of my own ANA testing saga to give you a point of comparison!

When I was first tested for lupus, I suppose it was about six years ago with the first year of absolute hell back in 2004.  I didn't have a regular, consistent doctor at that time, so I got bounced about a little bit between three doctors that worked in the same practice.  When I was tested for lupus, this doctor also tested me for Lyme Disease, HIV, and an rheumatoid arthritis, as I remember.  I asked him what the test meant.

"Well,"  he said, "We just want to check.  And if the ANA is negative, then we don't need to worry about lupus."  So, when the test came back negative, I took him at his word.  That meant I didn't have lupus.  I didn't have to worry about lupus.  And we were both wrong.

In reality, what he probably should have said was that we didn't have to worry about lupus then.  Just because you have a negative ANA doesn't mean that autoimmune disease is off the table.  I read somewhere once that it takes about ten years for a positive lupus diagnosis-- and that' s a long time to have a negative ANA.

Then, back in 2006, I finally had another flareup of symptoms and I talked to my first doctor at Student Health, Dr. M, about everything that was going on.  I was getting frustrated.

"Really, this sounds autoimmune, and we should check to be sure,"  he said.  "I'd really like to run an ANA on you to check for lupus..."

"But I've already been tested once already!"  I whined in my desperate, squeaky voice.  I had really invested a lot of emotional importance in that first negative test.  Dr. M, however, shook his head.

"You can have a positive ANA later even if the first one is negative," he said.  "If you're clear in a couple separate tests over at least two years, then I think we can put that possibility aside."  So, I let him draw blood, it came back negative, and once again I was safe to assume that I didn't have lupus.

He was probably quoting something official about lupus testing, but for me it gave me a false sense of security, and I promptly went into denial.  I did not have lupus, I would emphatically assert.  And I had two clean ANAs to prove it. 

So, about a year and a half later, when I walked into my new doctor's office at Student Health, the fabulous Dr. H., she once again wanted to test me for lupus with an ANA.  Naturally, I was a little nonplussed, but she could explain things much more coherently for me, I think because I'm her second or third patient to go through this process.  "It takes anywhere from 5 to 10 years to get a positive lupus diagnosis," she explained, "and 95% of lupus patients will eventually have a positive ANA.  That means we need to keep testing regularly to check until we know for sure your problems are from something else."  When I asked her what that ANA would mean, she told me, "Even if the test is positive this time, don't panic.  Just because you have a positive ANA won't necessarily mean you have lupus.  But you almost have to have a positive ANA to be diagnosed with it."

So, that's the reason that I was tested two more times, and the fourth time I had that positive ANA.  And, if I had stuck with first explanation of the process I received, I might never have gotten tested again unless I had had a doctor who knew the process better than my first doctor.

So, it seems that all doctors get the same training, but they interpret it differently and probably never have to counsel many patients on the process.  And, for a disease as rare as autoimmune diseases generally are, that's to be expected.  We're expecting general practitioners to be the watchdogs for problems that are really in the realm of specialists.

So, don't be surprised if you hear a lot of different things about lupus as you go through the process.  It doesn't hurt to check up online from credible sources about what your tests are, and especially what they mean.

Lupus Guide for the Perplexed: ANA testing

I have a strange reaction to bad news.  I want to laugh at it, in the most savage, sarcastic and brutal way possible.  I know it's an odd response to tragedy, but for some reason it helps me keep things in perspective and keeps me from going insane.  So, with all this auto-immune disease stupidity I'm going through, I think I'll make fun of that, too. 

In the interest of giving people some basic information on what the SLE testing process is like, and in the interest of me not going insane, I've decided to kill two birds with one stone and do a series on lupus vocabulary.  The information is all culled from legit government and academic sources, although a little...  strange.  This is the first installment, and I hope you enjoy it!

---

ANA (Anti-nuclear antibody): 

In layman's terms, this is a blood test to determine your body's level of misdirected hatred and self-loathing, and could just as well be termed your Immunological Emo Factor; it's just a way to see if your white blood cells have a Flock of Seagulls haircut or listen to Snow Patrol on their itty-bitty little iPods.

To be serious, an ANA is a serum-based screening method that's designed to check for signs of your immune system attacking normal cells instead of, you know, diseases and stuff.  A lab technician puts some of your serum in a petri dish with some cells to see what happens.  If everybody holds hands and sings protest songs, then it's negative.  If World War III in a microcosm breaks out, then it's positive.   The presence of antibodies that go after the nucleic matter in cells is an indication that something is rotten in the state of your autoimmune Denmark, telling your doctor that it's time to look further and see why everybody's so angsty all of a sudden. 

This test can have  a variety of different 'positive' readings that can be helpful to point your doctor to possible diagnoses, but it's not by any means going to tell you if you have SLE; a positive result on an ANA can indicate everything from other autoimmune diseases to cancer to absolutely nothing.  This is simply the version of your immunological "check engine" light going off.  If it's blinking, then maybe you've blown a head gasket.  It's much more likely that your gas cap is loose.

How important is a positive ANA to being diagnosed with lupus?  Sort of.  Depending on whom you ask, 95-97% of lupus sufferers will eventually have a positive ANA.  (And there's literature trying to figure out what's up with that other 5%.)  The ANA doesn't mean you have lupus, but it is the first line of attack doctors will use to determine whether or not to start worrying about it. 

So, if a doctor, like a good car mechanic, suspects lupus, this is often the first place they'll check because there is no reason to run more specific antibody tests until this one shows that there's a problem.  But, just because you get a negative result on your first ANA doesn't mean you won't pop positive later-- so it's important to have your ANA run several times, over several years, and make sure that all come back negative before you stick a stake in the heart of your autoimmune vampire.  He might still be lurking, with his Emo haircut and black lipstick, to show up and whine about how you don't appreciate him when you least expect it.