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Thread: new here!

  1. #1
    Join Date
    Aug 2013
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    Default new here!

    ok ive had a rollercoaster of a ride of being diagnosed , all started 15yrs ago of reoccurring symptoms of : temp(101) ,fatigue,joint pains,brain fog,swollen glands, a general feeling of flu or mono...may last 7days to a few weeks..all but one test for me comes out lupus, so my dr finally said im prob the 1 out of 800 that has the one neg test. so I started on plaquniel. again. I was on it for a few yrs , then took myself off, but after a few flares , and blood work showing some kidney involvement im back on it. im an active person,love life, always positive ,but when a flare happens life stops....its frustrating, my biggest complaint when I have my strange things happen: iritis twice, heart issues,migranes etc. I feel dr see me and say your so healthy, they cant see that my body is under attack. Im not a complainer,i don't go to dr often, so when I do better believe ive tried everything

  2. #2
    Join Date
    Nov 2001
    Victorville, California
    Blog Entries
    Thanked 1,128 Times in 743 Posts


    Hello and Welcome to our family! It is not unusual for doctors to have limited knowledge about Lupus and how it affects us. That is why I always advocate the WE must educate ourselves about the disease, how it affects us, its treatments, its medications and how those affect us. No one knows our bodies better than we do and if we are armed with information, we can then educate our doctors and insist that they treat us for our symptoms and insist that they believe us when we say that there is something wrong. Like many of us, you know what your body is telling you and you do not seek medical attention unless you know that it is needed. So, you may find it valuable to learn as much as you can so that you can educate your doctor and then you and he can make informed decisions TOGETHER about your health and your treatments. I wish you the very best and welcome to our family! Peace and Blessings - Namaste: SAYSUSIE
    Look For The Good and Praise It!

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