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    Aloha!
    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 commencing...so 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.
    Aloha!
    C

  2. #2
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    tgal is offline Super Moderator Super ModeratorEmperor of the Solar System
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    First let me welcome you to our family! You have come to the right place for support and information. There are fabulous people here and always someone willing to help! We will be here for you as you travel down this path and I look very forward to getting to know you!
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    SouthFLWahine (09-11-2012)

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    hi, and welcome.

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    SouthFLWahine (09-11-2012)

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    Welcome - glad you found this community
    ~ Morrison
    SLE and Sjogrens
    It's hard to take over the world when you sleep 20 hours a day (Get Fuzzy)

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    Welcome C!

    This forum was very supportive of me when I was going through the diagnosis process and I hope it's the same for you! My advice is just to continue what you've been doing. Educate yourself as much as possible, without driving yourself crazy!
    Best wishes,

    M

    Lupus, Secondary Raynaud's Phenomenon, Pernio (Chilblains)
    Plaquenil, Amlodipine

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    SouthFLWahine (09-11-2012)

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    HI and welcome to WHL SouthFLWahine "C"... We'll keep our fingers crossed here that it's just "LET" and nothing more. From what I found, if you smoke cigarettes, quit (smoking interferes with medication). 'Course, that's a good idea to do anyway. If you go outside, cover exposed skin as best you can with either high SPF sunscreen, and/or clothing. Wear hats. Ya gotta be careful with the sun. You say "Aloha!"... are you in Hawaii, or just wanting to be?... I wanna get back to Mauai... good luck with the future testing and doctor hunt.
    "There but for the grace of God, go I."
    "... His mercy endureth for ever."

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    SouthFLWahine (09-11-2012)

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    Question Knowledge wanted....please help!

    Sorry I wasn't able to post after my 1st rheumy visit but things have been crazy and I've been crazy exhausted!! Had my 2nd rheumy appt this morning and it was interesting, to say the least I've been suffering with these weird & super painful headaches for about a year...that only hurt on the left side of my head for some reason...and I had a doozy this morning when I got to the doc's. For some reason my blood pressure, which is normally low (109/90ish on avg) was 148/104!! The nurse took it three times to be sure...is that normal for someone w/SLE & Tumid Lupus? My doc wound up sending me back to the Dracula wannabes for another round of an 11 tube blood draw, accompanied by a UA....then it was off to the diagnostic center (again...had chest X-ray 9/13) for a so- so fun (NOT!!!) mammogram....and I've got another round of biopsies scheduled on Tues afternoon on some of the new lesions that have popped up. Seems a bit like over-kill to me...can anyone tell me if all of this testing is normal? Oh yeah, and I'm supposed to make a neurology appt too....PLEASE, PLEASE HELP!

    Aloha,

    Chelle

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    it may sound funny......
    but lots of testing is good.

    lupus cannot be diagnosed by any positive test....
    it can only be diagnosed by ruling out lots of other options first.
    and then looking at the symptoms.

    the same goes for some of our secondary ailments.
    it may be lupus related......
    or it may be a primary complaint.
    the only way to tell often is by more testing.

    so lots of tests,may be your doctor being proactive....
    or he may just want you to help finance his next holiday.

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    SouthFLWahine (09-29-2012)

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    Thank you SO much for the link and the advice. I'll definitely check it out and pass it along to my family, etc. Being so completely new to this disease, I have been caught unaware...to say the least!
    I'll let you know how it goes with the doc tomorrow. I was just extremely grateful my derm had put in a call for me and I was able to get an appointment so quickly after my initial diagnosis.
    Much appreciated!

    Aloha,
    C

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    Hi I am in south Florida too where exactly are ou?

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