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Thread: I live in the state of da Nile (denial)

  1. #1
    Join Date
    Sep 2007
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    Default I live in the state of da Nile (denial)

    Hi this is all so new to me but I was wondering if anyone started out with simple symptoms like inflammation of a knuckle, unexplained fevers, hair loss, pain in the knuckle joint and major fatigue and have it turn into full blown lupus. My doctor says I have lupus but those symptons are the only real symptoms I have. He has me on prednisone and iron pills and I have been feeling GREAT!! The swelling in my knuckle has gone down and I am able to use my hand again but I still don't think I have lupus. It is an abstract concept to me so much so that I have asked for a second opinion, but I am wondering if I should since the meds I am on are obviously helping. What do you all think? Thank you for your time. Cheers, Wendy

  2. #2
    Join Date
    Nov 2001
    Victorville, California
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    Hi Wendy;
    Yes, I think many of us started out with mild symptoms that were full-blown by the time that we got our diagnosis. I went to my doctor because I had a rash on my face that I thought was a sunburn that would not go away. At that time, I had no aches and pains (well, I taught aerobics and thought all of my aches and pains were from that) and no internal involvement.
    It took a full year for me to get a definite diagnosis. By that time, I had lost almost all of my hair, I had ulcers in my mouth and nose, I had lesions on my scalp, my hands, my feet and my ears. My joints were inflamed, stiff and sore, and my fatigue was unbearable and I was horribly sick every single day!
    After medication, self-care and lifestyle changes for 7 years..I was downgraded to mild lupus- where I remain today. However, I have active Fibromyalgia and Raynaud's as well as other auto-immune disorders. During the diagnositc process, I did not want to believe that I had Lupus either. But, after developing so many symptoms, I quickly became a believer because I had to aggressively fight for my health and I could not do that by being in denial.
    I hope that you don't have Lupus, but with your have something. Whatever it is, you MUST be pro-active in your health care, you must take your medications and make appropriate lifestyle changes so that you can manage your illness and return to some form of normalcy! Remaining in denial will do more harm than good. Please take care of yourself!

    Peace and Blessings
    Look For The Good and Praise It!

  3. #3
    Join Date
    Jan 2004
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    Default Tests

    Have more tests done. Such as a ANA, although these are not always acurate for Lupus, it will tell you that something is going on. It took almost 3 years before I was finally diagnosed with Systemic Lupus. I started out with some things going on, then it ballooned into Systemic Lupus. Now there is no question of what it is. The doctor I have told me that unfortunately you have to wait for the disease to manifest itself so it is a correct diagnosis because other diseases can mimick one another. Auto-immune diseases are very tough to get diagnosed. Glad the medication is helping you. MSkin

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