Understanding the cANCA test

[Chadwyck]

A friend of mine asked me recently about my ANCA tests in the past. This is a question I kept asking myself but since I started to feel so much better after treatment, I never bothered to ask anyone. I was too happy feeling good than to care anymore.

If Wegener's is a systemic ANCA associated form of vasculitis, why have every single ANCA test I have done prior to diagnosis up to now come back negative?? The negative test was the reason why my diagnosis was so far delayed causing more damage up to the kidneys. The only thing that test did was give me a false sense of hope, thinking I'm sick with something else. It was suspected when I had the tube inserted in the left tear duct April 2009, the "suspicion" of Wegener's came up on my medical report. That was when I googled it to find out what Wegener's meant...and found every symptom I had. There were more symptoms that I didn't have for sure, but the kidney problem came in 8 months later. Even with renal involvement, the next ANCA test still came back negative. It was when the nasal biopsy was done February 2010 I got the diagnosis so that I could start treatment as soon as possible.

My entire life, I always thought of a negative test as something good... especially if you're checking for a particular infection. That made me say...I might or might not...be infected with Wegener's. But when the test came back negative, I had a sigh of relief for nothing. Only to find out I would still have this deadly disease if I didn't get the diagnosis through another source! It's amazing how the mind works when you lack the education.

So, again, if Wegener's is ANCA associated, why do some come up positive and others like myself come up negative, but yet we both have the same disease?