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Thread: need some help and answers

  1. #1
    Join Date
    Jan 2014
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    Default need some help and answers

    Im on this website for a very close and busy friend of mine who has been diagnosed with lupus by one of her doctors and another that still wont confim it and wants more test. Her question is that shes wondering what kind of symptoms people encountered when they werer first diagnosed. Shes had only a few from the face turning red ankles hurting a little and some fatigue. also what your titer ratios were (sorry i may have mispelled that) and was your ana positive? and How did your face feel too? any help and answers would be greatly appreciated.

  2. #2
    Join Date
    Nov 2013
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    They seem to want to do a lot of tests and you can even have false positives. This doesn't stop the fact that your friend feels like crap and has no idea what's wrong with her. I was actually glad when they finally diagnosed me because then I had something I could work with. I have the red rash on my face and have terrible pain that seems to travel throughout my body. Weather plays a factor in how I feel. Headaches increase. So- get a final diagnosis they they can start treating it. I take plaquinel which slows down the disease process. There are new drugs out there, so find a rheumatologist that you like (if you don't like your current one- keep looking).
    If your friend would like someone to talk to- I would be happy to lend an earů I have had lupus for 22 years.

  3. #3
    Join Date
    Nov 2001
    Victorville, California
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    You friend is very lucky to have someone who wants to help and to understand this illness that she could possibly have. Lupus affects each one of us differently, so we do not present with the same set of symptoms when being diagnosed. Some people do get the butterfly rash, others do not. There are many different types of rashes with Lupus, some are painful and some are not.
    The ANA titer is only one of many tests that have to be considered before making a diagnosis and there are several other diseases that have a positive ANA. While approximately 99% of the people with Lupus do have a positive ANA, there are many who have ANA Negative Lupus. A positive ANA test means that autoantibodies are present and by itself, the ANA test does not indicate much of anything. For Lupus, most labs use an ANA titer of 1:160 or above to indicate a positive result. A positive ANA reading is supposed to tell the doctor to KEEP LOOKING. Her doctor will need more blood tests in conjunction with her medical history and the symptoms that she is displaying, before a diagnosis can be made.
    Please read through some of the "stickys" on the top of each forum, you will find a wealth of information in them. May I also suggest that you visit the "Lupus Foundation's" web site for more information and answers.
    I wish you friend the very best and you, as well.

    Peace and Blessings
    Look For The Good and Praise It!

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