After 45 years of dealing with lupus I know that sometimes I have positive ANA and sometimes I do not. In general I have positive ANA in the summertime when I have been exposed to sunlight or something else has triggered my photosensitivity. In general I do not have positive ANA in the middle of the winter (no matter how bad I feel or how many other symptoms I have). In fact, I have met rheumatologists who in January swear on a stack of Bibles and their Hippocratic Oath that I do not have lupus and then just the opposite come June.
So, If I know that someone with summertime skin manifestations might not have positive ANA in February, why aren't MDs sensitive to the possibility? Oh, its a rhetorical question, I know the answer. But how can I explain it to a young one who is just trying to get a decent diagnosis. She had skin manifestations all spring and summer. Her pc told her that her lupus was probably the type that just affects the skin (she is fatigued, in pain, and has already experienced hair loss). This PC did not order an ANA and she can't get to a rheumy until February, When the rheumy orders the blood work in February the results are likely to look fine. Then come summer her skin well erupt but no one will order blood work. Instead they will tell her to see a rheumy. That will take six months. It will be winter again.
The only way off this merry go round is blood work when clearly symptomatic. I know how to get blood work done in June when I am symptomatic. Basically, I just ask - request that my internist run the "lupus" test when he is getting blood for all of the other stuff that old fat women get checked for on a routine basis. Or I walk into the nearest immediate care center and ask them to do the blood work because by the time I get to my rheumy the results will have changed. They do it because I ask them to do it.
It makes me nuts - OK, you guys know that I have been nuts for decades - to imagine how she is gonna feel in February if the rheumatologist tells her that she doesn't have lupus because her blood work looks fine. I hate that this happens to people. DOES ANYONE KNOW WHAT I AM TALKING ABOUT OR THIS AN EXPERIENCE UNIQUE TO ME? IF OTHER PEOPLE HAVE HAD THE EXPERIENCE, CAN WE HELP HER be prepared for the possibility of initial misdiagnosis/undiagnosis without making her more afraid? Can we/ should we help her reduce the lag time between her symptoms and her blood work? Or is our support limited to soothing words?