As a "newbie," I'd like to start by saying how happy I was when I came across this site! I was diagnosed with LET w/probable SLE (based on symptoms) just as the weekend was naturally I did what most left in my position would do; I Googled, lol! Much to my chagrin I found most of the information to be fairly inconsistent from one site to another...with very little, if any, information available on LET specifically.
Friday afternoon, I received a call from my dermatologist (actual doc not an assistant...shocker!) telling me that my skin biopsy had come back positive for Tumid Lupus and he was referring me to a rheumatologist to also be tested for suspected SLE, as soon as possible, I was more annoyed than worried....even though some of the only words/phrases I remember comprehending were: referral; further testing; as soon as possible; suspected; systemic and faxing my results (so they "wouldn't get lost") along with the rheumatologist's contact information.
Although I'd heard of Lupus, I'd never paid attention to the disease's details since no one I'm related to, by blood, had ever been diagnosed with it....and I most definitely had no idea so many different variations of Lupus existed...hence, my lack of initial concern when I received the news.
I look forward to learning more about this disease from others who actually have experience living/coping with it.