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Thread: Newly Diagnosed

  1. #1
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    Default Newly Diagnosed

    Hello all, my name is Taura and I am 25 and I live in Florida and I was diagnosed approximately 3 weeks ago with SLE. I have been having symptoms for the past 7 years and I was misdiagnosed and the doctors here have been treating me with what they called "Occipital Neuralgia." They told me that the nerves in the back of my head were damaged in 2 car accidents that I was in and that was what left me with debilitating headaches. All of the aching joints and muscle weakness they told me was also damage from the accidents, though no one could tell me why I had a lot of these symptoms before the accidents. About a year and a half ago I had a bald patch develop in my scalp which I thought was a chemical burn from a relaxer I'd received around that time, of course my hairdresser said it wasn't but I was not comfortable with the fact that she put the chemicals on my scalp after seeing the spot but not telling me that it was there. I figured that it would heal on its own but it did not and more developed. I was becoming depressed about it and finally after over a year of my mother telling me to go see a dermatologist I did. She told me after examination that it could possibly be skin lupus, but she needed to do a biopsy to be sure. She also requested some blood tests and began steroid injections into my scalp, which worked beautifully and within 2 weeks of the first injections the hair on my scalp was finally growing back!

    I was then called by my doctor who told me that some of my blood levels had come back elevated but would not tell me which ones, just that for precautionary measures she was referring me to a rheumatologist. I was pretty ignorant of what rheumatologists deal with except arthritis and was quite concerned. I went to see him and after running 3 different sets of bloodwork and one EMG (horrible pain!) later he told me that there was no doubt that I had SLE and had 5 of the 11 characteristics necessary to diagnose me. It hit me like a ton of bricks and I did not know how to react, I still don't. I am actually still in a state of denial and shock. My family and fiance have been great but it is hard to explain the turmoil that I am feeling. I am feeling on the whole better since starting the Plaquenil and within the past week Prednisone, but I am a very active person and my doctor has restricted me from physical exercise ( ) because he said that my muscles are swollen. I actually have muscle biopsy on Wednesday which he says is necessary in order for him to treat the swelling he has to know what type of swelling I have. It is nice to have a place to vent and read others success stories and just meet some people who have the same problem in common.

    Sorry for the long post, still in shock, :?
    Taura

  2. #2
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    Taura, Hey..welcome...

    Oh, that wasn't a long post at all. You should read some of mine.. pages, and pages...on and on.

    Now you know, and that is a plus to ensure proper treatment of your symptoms. Those seven years must have been extremely hard for you, Taura.

    To digest a diagnose of such nature can be hard. Up and down emotionally. Shock, denial, anger, grief, accepting and then it may start the circle all over again. It takes awhile to find peace and accept an illness as part of you. It may have your body for a spell but we can truimph over it from taking our spirit. I am learning and adjusting.
    Modify, adjust and still enjoy life. All aspects even if it is on a different scale... a different plane.

    I have SLE, Sjogrens Syndrome and toss a bit of GERD into the mix.

    Here you can read words how to cope, how to heal, how to have fun, find laughter, how to deal with the pain, the frustration..advice and just a good old place to g-r-r-r-r--stomp and rant. And for you to share how you are going about it. We like it all...

    Lot of wonderful people to lift you up when down, people who need your encouragement too and many post with great resources. It is all give and take regardless of the mood of our posts, eh?

    Again welcome....Life will be good. It is.
    Hugs,
    Oluwa

  3. #3
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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Hi Taura :lol:
    Oluwa has given you such a wonderful welcome. I just wanted to pop in to let you know that I am glad that you joined us. As you can see, this site is filled with wonderful, caring, informative, supportive people and we are here to help you in any way that we can. You are not alone!!

    Peace and Blessings
    Saysusie

    P.S.
    Oluwa.....I love your halloween avatar!!
    Smooches
    Saysusie
    Look For The Good and Praise It!

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