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Thread: Newbie and Newly Diagnosed:(

  1. #1
    Join Date
    Apr 2014
    LI NY, USA
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    Default Newbie and Newly Diagnosed:(


    Looking forward to learning alot and making some friends that understand what this is all about.

    I have been feeling unwell since June 2012 and have had fibromyalgia since 2002. Knew this was something else but had a very hard time getting any doctors to help. Positive ANA in Dec 2012 but was told it was not Lupus but UCTD and would need to "cook" for a few more years until other real symptoms developed..."everyone is extremely tired and pain is from fibro and feeling of shortness of air is anxiety". Very crazy time but have been sent to pysch, neuro, neurophych, ENT, Ear specialist and back to rheum on Thursday who said she now believes it is Lupus, here's a medrol pack and if it helps it is most likely Lupus and we'll move to Plaquenil. Really I'm dumfounded. Medrol really seems to be helping but I'm very confused.

    Thanks for having me

  2. #2
    Join Date
    Mar 2011
    pinjarra, western australia
    Blog Entries
    Thanked 1,844 Times in 1,279 Posts


    hi boxermama,unfortunately it is not uncommon for us to hear these type of little is known about auto immune disorders, that many doctors do not know what to do.I am sorry you have had a rough road, but hopefully you can now start to receive proper treatment, and respect.
    When you're stressed, You eat Ice cream, Cake, Chocolate & Sweets. Why? Because stressed spelled backwards is DESSERTS.

  3. The Following User Says Thank You to steve.b For This Useful Post:

    Saysusie (05-04-2014)

  4. #3
    Join Date
    Nov 2001
    Victorville, California
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    Thanked 1,128 Times in 743 Posts


    Hello and Welcome;
    You are not alone in this merry-go-round of diagnosis! Many of us have been exactly where you are. As Steve mentioned, Lupus is a difficult disease to diagnose and the standard seems to be: wait for symptoms to appear and/or for the disease to develop and then diagnose. Fortunately, your doctors are willing to treat your symptoms prior to an official diagnosis. Many, many of us have had to go without any treatment for our symptoms because we had not received a diagnosis.
    I hope that the Pack does bring about some improvement in your symptoms and that you will be on your way to a treatment regimen that works for you.

    Peace and Blessings
    Look For The Good and Praise It!

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