Hi
i think the worst part about being sick is not having answers ... if it has a name then there are ways forward ... i was 'lucky' to have been dx quickly ... i have had the symptoms for years but going to different doctors never helped nail down SLE ... eventually i got pericarditis (heart lining inflamation) and tested positive (ANA 1:640 & double strand dna)
3% of lupus patients will always have a negative ANA (according to Dr Daniel Wallace) so it is quite common for the levels to change especially higher at times of flares or lupus activity ...
my best friend has become reasearching ... books, internet, anywhere ...
Hang in there and although scary you are definitely not alone ...
PS good luck with the rheumie and look on some 'lupus' sites re: how to prepare for a doctors appt. i found the advice invaluable as i am now having to change doctors for a while ... keep posting!
