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.