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  1. #1
    Join Date
    Feb 2013
    Thunder Bay, Ontario Canada
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    Default New here

    Just found out a few weeks ago that I have discoid lupus. Is there anything else I should be getting doctors to look for? I have gotten a biopsy done and blood work. Just waiting for the results. Any info would be very helpful. Thank you.

  2. #2
    Join Date
    Feb 2013
    Benson, MN
    Thanked 4 Times in 4 Posts


    Welcome Gaye. I'm sorry to here about your diagnosis. Glad you found the group and I hope you find the information and support you need. I do not have a diagnosis yet and do not have any advice on your condition. Sorry. I'm sure someone will though.

    "I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel." -Maya Angelou

  3. The Following User Says Thank You to tupelohoney For This Useful Post:

    Gaye (03-04-2013)

  4. #3
    Join Date
    Aug 2012
    Blog Entries
    Thanked 79 Times in 57 Posts


    I would recommend reading up on DLE and educating yourself to the condition.

    Maybe if there are any soaps,lotions or makeup that is more aggravating? What can you expect if lesions do break out do you need to call the office then and be seen or do they have a set time frame to see you? What should be considered an emergency?I don't know what your symptom set is but perhaps making a list and saying here are the things I have most issue with most often-do any of these qualify as "emergency" or should I call when something from here pops up/worsens.

    if you run daily fevers and they are going to use meds to combat them ask how long until I should notice a difference,if I am on meds you script for fever and notice no change after whatever time frame he gives then are you to call and if fever rises while on meds is that grounds for a call in?

    I guess anything that you are questioning at all get a notebook and write them down as you will likely forget.Don't be afraid to speak up at the appt if the dr is going to fast or you don't understand what they are talking about or referring too.

    Ask questions about ANY statement that they make that you have issue with-it's always better to do that than to leave wondering and then have to come to the internet and ask something like "I usually run a fever and am now on meds how long until I notice a difference and should I call my Dr as its been 2 days"(not trying to be mean)

    Everyone reacts differently so we can only give our experiences and don't know what he would consider "Hey EMERGENCY" better to find out from the horses mouth so to speak.

    This will also give you a clue about how the Dr will react if you like to question statements he's made,have additional questions and how willing he will be to sit and take the time to explain or alleviate any fears that you may have.If he acts all hurried and rushed,doesn't want to explain lab results(what they do/or could mean) it will likely show you how the attitude will be in the future.

    If you need a Dr who is willing to talk,listen and answer any concerns you have and this one won't then you will know that you are likely looking at a predictor of future behavior and may not wish to continue with them if you need the extra reassurance.If they have no issue(which they shouldn't as this is a life-changing diagnosis you have been given) then you know they won't likely have issue in the future if you need time/explanations and won't be rushed.

    I wish you well at your appt and perhaps someone with DLE will come along and be able to add to it-I just tried to come from the side of a newly diagnosed patient with questions about office procedure and what/how they consider proper protocol for urgent issue and treatment.
    SLE w/Sjogrens Overlap and Raynaud's diagnosed in 2007.Fibro in 2009.

    The Early Bird May Get The Worm But the Second Mouse Gets The Cheese.

  5. The Following 2 Users Say Thank You to ItsLupus2007 For This Useful Post:

    Gaye (03-04-2013), tupelohoney (03-01-2013)

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