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Thread: Hi all

  1. #11
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    Default

    Thanks Carly
    Just got back home I will sort it now
    Val

  2. #12
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    Default

    Yeah, Val, my fingers are hurting today so I can't do much typing, but I did take a look at your site and would like to join.

    Take care,
    Rhonda
    "Someday I hope you get the chance to live like you were dying"~Tim McGraw

    Rhonda

  3. #13
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    Default Fibromyalgia and Lupus

    Hello,
    I have both Fibromyalgia and SLE. I am very scared about this sticky blood is this related to the CNS vasculitis? And what exactly is sero negative lupus? My ANA test was 1:640 and my DNA was > 200. ANd I don't want to go to the edge of death again. Brain anuersyms run in my family, in retrospect my grandmother who died at 42, who had 4 brain aneursyms, I believe she too had lupus but she died in the early 80's and was never diagnosed but my grandfather says she was a hypocondriac, of course .... even my rheumatogolist said you haven't showed any labs indicating lupus for as long as he has been my doctor, and then he says sorry, but we have serious issues now. I am sorry I ever doubted you. I was diagnosed at Princeton Medical Center by Dr. Tiku and then the UCONN Foundation, by Dr. Rothfield. These are foremost lupus doctors, I found myself thinking maybe the diagnosis was incorrect, and then St. Patrick's Day comes. I have lost 45 pounds since November and 2 inches from my height. The nurse said, "oh that's bizarre, you lost inches in your height." I was 5'7", now I am 5'5". I don't know because I am scared...

    Lupus is like a terrorist, I never know when or where it's going to attack...
    The threat level is sticky blood red.
    Does anyone know anyone who has had this an survived... not lupus the CNS v and Brain Aneursyms? I need some reassurance that I can get back to remission.

    Thanks,
    Betsy
    Life According to the Wolf...

  4. #14
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    Default

    Hi betsy
    sero negative Lupus is lupus diagnosed without positive antibodies. 90% of lupus sufferers are sero positive==i am one of the other 10%.
    I do have sticky blood but am treated with Plavix as I have had low platelets and tend to bleed.
    Are you on warfarin,
    If you ever want to chat my msn, and yahoo messenger links under my name. I am an ex nurse and a good listener. Please try not to be to afraid. I know that is easier said than done but don't let lupus totally dominate your life.
    Take care and I look forward to chatting to you

    Val

  5. #15
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    Default

    Dear Rhonda
    Please join my site when ever you want-anybody else welcome.Its fun as well as information and support. Links under my post

    Val

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