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Thread: Hello, just diagnosed with SLE and scared.....

  1. #11
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    Here, Here, welcome to the wild and whacky world of Lupus in all its forms and variations. You'll get great advice here, and even if we don't have the answer you are looking for on a given day, we will still always be here for you. this can be a scary disease, especially the unknowns. Take it just a day at a time, see where you personally are and how you personally are being affected. By all means, take care of yourself.

  2. #12
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    Default Happy New Year

    I wanted to say thank you to everyone who replied....I welcome all the advice! You all are so nice! I haven't had access to a computer in 3 weeks! I went for a second opinion and the ANA came back the same (pattern, titer) but there were a few more tests like the double strand and a couple others that led the Dr to believe I may not have it....he is sending me to U of M, and thinks that my body is stressed from my breast implants and recent removal of them. Doesn't think I should continue the plaquenil until my appt...I don't know.....so frustrating, I know this stuff may be hard to diagnose but I feel like a guinea pig

  3. #13
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    Gee you have had a bit of a rough time lately, and without the Internet where people can support you through your Lupus diagnosis, or as it turns out at the moment, un-diagnosis. Hopefully the new set of tests will give you more of a picture of what is wrong with you, but most importantly, how you can be helped to start to feel better.

    Hopefully 2011 brings you a happier, healthier and a better Internet connection for you.
    Diagnosed with Lupus - 22 June, 2010

  4. #14
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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    I just wanted to welcome you to our family and to tell you that I am glad that you found us.
    One thing that your doctors should tell you is that, while you may not have Lupus..that DOES NOT mean that there is nothing going on. There are quite a few other conditions that can have a positive ANA (especially given the fact that your Lupus-specific tests came back negative). So, instead of making you feel as if you are losing your mind and discontinuing your medications, they should be testing for the other possible conditions (many of which use the same medications to control their symptoms).
    Stand up to your doctors and tell them that your symptoms are controlled by the current medications and that you are not willing to stop them and suffer just because they do not think that you have Lupus. You know your body and you know that something is wrong, it is their job to find out exactly what is wrong so that you can be appropriately treated. Insist that they work WITH you on this and that they do not attempt to toss you out as if you are insignificant.
    We are here to help you as much as we can and in any way that we can. Please know that you are not alone.

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

  5. #15
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    tgal is offline Super Moderator Super ModeratorEmperor of the Solar System
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    You tell em Susie! Welcome back! We missed you
    Mari

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

    ~Winston Churchill~







  6. #16
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    Hello MomOfFour,
    Thankyou so much for the wishes to us all and happy new year to you also and i really hope it's a better one for us all also.
    Sorry you've not had access to your pc for 3wks, if that happened to me my hubby would be throwed off his.lol

    I know how you feel concerning a guinea pig but years of being messed about i don't stand for it no more, please try and not to be to flustrated as it can get you that way but if your not satisfied stand up to them and tell them as i don't mess about now and i've been throwed off a few doctor's books through it feeling like yourself but holding things in makes it alot worse and i've defintiley found that out over the years.

    Luv Terri xxx

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