Venting but also asking how to help someone else - HELP

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?

I think that sharing this information with her is a step in the right direction. It helped me to know that there is a problem that almost all lupites suffer in common, namely not being properly diagnosed. Maybe she could start documenting her conditions an a daily basis--with pictures and describe circumstances. The doc may not take time to read it all, but she will be more confident when she explains to the doc what is happening and under what circumstances.

Maybe we could make a list of questions and common tests that she could take with her.

Also, maybe she can ask someone to go with her for moral support and to help her remember things if she is foggy and stressed. Some of my docs let me record our visit because I explained how confused I get and how poor my memory can be at times

I just wrote a 7 point list for newcomers to lupus and i hit the wrong button and deletes it. EEEK. oh well, will redo it later