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Type: Posts; User: jujubeee

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    on lupus fatigue

    I haven't been here in awhile..so sorry. Had surgery, been recovering..doing ok! Alot has changed..on cellcept, new rheumie, have seizure disorder, nerve compression syndrome, etc.
    I did make a new...
  2. Plasmaphoresis to help find a CURE for ai conditions by donating your PLASMA

    Having plasmaphoresis at NO CHARGE. Giving Plasma to help find a cure of LUPUS and GETTING PAID TO DO SO. It's a WIN WIN situation.

    RESEARCH NEEDS OUR AUTOANTIBODIES!!!! I'm doing plasmaphoresis...
  3. my friend made an important work about lupus

    http://youtu.be/s0MBLvJ0ERE This is a substantial video about lupus and the people with lupus, your neighbor, your friend or someone in your family has lupus.
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    music vid of the criteria used to dx lupus

    please tell me what you guys think of the vid. I'm a lupie myself and learning all the time about lupus. Everyone has valuable input and I so appreciate all you guys. HUGS, Julie...
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    Jujubeee's Lupus Videos Thread

    This video is to help bring awareness to LUPUS in memory of the many lupus warriors who have lost their fight with this disease, and to give HOPE to all people with lupus by offering suggested online...
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    Thank you SO much for the GREAT information. I...

    Thank you SO much for the GREAT information. I definitely see the importance of being tested with a more sensitive test for porphyria. How ever am I going to get good care at this point. My...
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    Thanks for the well wishes Teresa!!!! Julie

    Thanks for the well wishes Teresa!!!! Julie
  8. Thread: Neuropathy

    by jujubeee
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    Hi! Hope it's ok, I did a search for porphyria...

    Hi! Hope it's ok, I did a search for porphyria to see if anyone at all (besides me) has an issue with this. When my dermatologist did his biopsies he also ordered urine test for porphyria. I was...
  9. Good Rheumie or Bad Rhumie? U be the judge

    Dx'd SLE Feb 2010. Rheumie is very nice, but doesn't like to talk "numbers". He speaks "layman" to me...his hopes for me are that the disease will be mild but it is an unpredictable disease.
    1. ...
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    Hiya. Was dx'd with lupus panels (ANA's) and...

    Hiya. Was dx'd with lupus panels (ANA's) and skin biopsies. Showed signs and symptoms of SLE yrs before dx, but ANA's were always neg. before. Have peripheral neuropathy lots of tingling, burning,...
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    Porphyria TOO? Come on! Anyone Else?

    Oy...same time dx'd with SLE also dx'd with porphyria. I admit I haven't gone for more sensitive testing for it yet. I'm suppose to be doing a 24 hr urine and fecal (YUK). So is this cutaneous...
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    I agree. Treat it like a cold symptom. Keep an...

    I agree. Treat it like a cold symptom. Keep an eye on it though and of course have a throat culture to check for strep if it gets worse or doesn't go away. I also understand sore throat can be a...
  13. Thread: skin biopsy

    by jujubeee
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    Don't take no for an answer. My dermie told me...

    Don't take no for an answer. My dermie told me he'd SQUEEZE me in when I had the rash. I waited for a good one; and I got the worst rash I ever had! I called his office and told them he PROMISED...
  14. Hiya I'm a new loopie & family is sick of my health and complaining

    Hi to all! I like this site. I was dx'd Jan 2010 with SLE. Had symptoms and rashes for yrs, took lupus about 7 yrs to show it's ugly head completely. Double stranded DNA hit the roof, all ANA's...
  15. Thread: skin biopsy

    by jujubeee
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    Me too

    I had two skin punch biopsies and a lupus panel bloodwork the same time from my dermatologist. SMART MAN. He called me less than a week later to tell me I was absolutely positively dx'd with SLE. ...
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