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Thread: New here and wondering!!

  1. #1
    Join Date
    Aug 2008
    S E Missouri
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    Default New here and wondering!!

    Hello everybody! My name is Lisa. I am a 34 y/o SAHM to 2 wonderful boys. Lane who will be 11 on Sept 15th and Lance who just turned 9 in June. I went to see my DR today and was told that she thought I might have Lupus. I have a variety of symptoms that have been going on for several years. I have old seizures (seizures that started in 2004) my hair is falling out by the hand fulls but only when I wash it. I have major joint pain. I have unexplainable weight loss. And most recently I broke out in this rash all over my neck and on my chest. It did not itch or anything. I had to go to urgent care to get a steroid pack to get it to go away. I am also having some vision problems. My retinal specialist believes I have chorioretinitis which is inflammation of the retina which can be caused by an auto immune disorder. My DR had a ANA/DNA blood test done and had it sent off out of town so I won't get the results for a couple of days. I also had an RA test done today to see if I had RA which it came back negative. My Sed Rate was only 6 today even tho I had some minor inflammation going on. Probably because of the steroid pack. Anyway I just thought I would drop in and introduce myself and get anyone's thoughts on what might be going on with me. I know Lupus mimicks several different diseases and that IF I do have it that it may take years to get a diagnosis. But I would still like to hear from yall!

  2. #2
    Join Date
    Feb 2008
    Nova Scotia, Canada
    Thanked 1 Time in 1 Post


    Welcome Limarie

    Getting a diagnosis for lupus is like trying to catch the easter bunny. Least for me it is.

    Be patient, this could take awhile. My mother had lupus and my sister has it. I've had a positive, some boarderline and a negative ANA test. I have the butterfly rash and malar rash; plus a raft of other lupus symptoms.

    What I don't have is a rhuemy who believes in lupus. She feels lupus is just a catch phrase that doctors use when they dont know what's wrong with you. (picture the look on my face) And yes I am stuck with her. It's very difficult to get another rhuemy ... it can take up to 4 yrs.

    But that doesn't mean that your doctor will not start treating your symptoms. So I hope you will start a program soon that will help you feel better.

    I'm sure the others will be along soon to welcome you.
    Oh look ... a cookie

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


    Hello and Welcome Limarie :lol:

    One of the reasons that Lupus is so difficult to diagnose, as you mentioned, is that its symptoms can also be attributed to so many other diseases. Your tests can be negative this month, but positive next month! Also, doctors often have to wait until your symptoms worsen or new symptoms appear before they are able to made a definitive diagnosis.
    Just as it is difficult to diagnose Lupus, it is equally as difficult to say that your symptoms do, in fact, indicate Lupus. They can also indicate several other conditions which are also auto-immune disorder and/or connective tissue diseases.
    As Sits-in-the-corner mentioned, not having a diagnosis should not stop your doctors from providing treatment for your symptoms. Especially given the fact that many of the treatments are the same for many of the auto-immune disorders. So, while you are in the "diagnoses merry-go-round", insist that your doctors treat your symptoms.
    Regardless of what you are diagnosed with or, even if you are not diagnosed, you are very welcome here! We will try to help you in any way that we can and we are always here when you need help!

    Peace and Blessings
    Look For The Good and Praise It!

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