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Thread: I'm beginning to doubt I have Lupus...

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    I cannot add too much to the responses that you've already received as they are all on point. In answer to a second part of your question: yes, often times your disease can develop more symptoms over time. Especially if one does not take their medication and/or if one does not make the appropriate lifestyle changes in order to avoid flare-ups or worsening of the disease.
    As has been said, Lupus is different for each of us and it comes in many forms. Some of us have very few symptoms and others are virtually bedridden due to numerous symptoms.
    While Lupus may not cause the deformities of RA, the symptoms (pain, nerve damage, inflammation) can be so severe as to make the use of your hands impossible. So, the potential for all AI diseases to cause life altering changes are all equally great.
    Like you, music is my life. As such, I do everything in my power to ensure that I can continue with my passion for as long as I can. I am absolutely serious about taking all of my medications, I exercise regularly (regardless of pain, exhaustion, fatigue, etc.), I eat healthy, I avoid all things that could exacerbate the disease or cause a flare up, and I make sure that I allow my body to rest when it needs to. Trying to achieve some form of normalcy with this disease is a full time job and we must be diligent in that job..especially if we are pursuing something that it important to us.
    Now, that is not to say that many of us have not had to defer our dreams or had to re-examine our dreams, or even had to build new dreams. It is important to know that all of these are possible and none of these are life ending. Many of us have decided that our most important dream is to be healthy and happy and that there are many things that can and will make us happy.
    I do wish you the very best in everything that you do and I hope that this illness does not prevent you from finding your happiness.

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

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    Quote Originally Posted by lovelyophelia View Post
    My only symptoms are joint pain, fatigue and canker sores. When tested my ANAs are positive. I haven't had the malar rash or any of the other symptoms, yet my doctor thinks it is Lupus. Is it possible for it to be Lupus with so few symptoms? Could it take more time for the symptoms to appear?
    Yes, it's most certainly possible for it to be Lupus with so few symptoms and yes it could take more time for other symptoms to appear but its also possible a doctor couldn't definitively diagnose Lupus with just those symptoms.
    Last edited by RaoulDuke; 03-10-2012 at 06:35 PM.

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    I just wanted to post because I had the same reaction when I was diagnosed with lupus.

    I was just diagnosed in October and at first thought it was crazy that I was being diagnosed with something that is potentially very serious. The funny thing about my diagnosis is my DENTIST! was the one who told me to get checked out. I had really bad sores in my mouth and lacerations that he said were uncommon, so I should get my blood tested. I did, and everything was fine. As soon as 2 weeks after this blood test I got really sick and could barely get out of bed for almost 2 months and all my blood test numbers were out of whack. I thought I just had a bad flu or something, and afterwards thought I was just tired from being stressed wth school, etc. After I 'recovered' I never felt the same. I had constant joint pain and relentless fatigue. My white blood cell count was extremely low and still has yet to recover fully to a low-normal level.

    My immunologist came to the conclusion that it was lupus, but just a mild form. I was put on plaquenil in October and just recently on prednisone because the symtpoms of joint pain and fatigue are still fairly bad. I have never had any sort of rash, except from majoy sunlight exposure. So from my experience, it is possible to have lupus with only mild symptoms. The plaquenil (with the help of prednisone) is finally kicking in after about 5 months and Im feeling great.

    If you are diagnosed (or possibly being diagnosed) I would suggest keeping a journal of any symptoms you get! I recently had a 'flare' with chest and back pains that I thought just were due to sleeping awkwardly or strain, but due to the possibility of the inflammation around the heart and lungs, my doctor was concerned and its being looked at more carefully.

    Anyways, ill stop blabbering, but just wanted to share my experience because I felt the same way. And now I keep a journal of any symtpoms and let me immunologist know because something small like a back/chest pain could potentially be something worse that I never thought it was- even though my lupus is only mild.

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    hi andrea, and welcome.
    it is good to see you joining in and adding your experiences.
    you can also add a new thread, to let people know about andrea.

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    Not everyone gets all the symptoms and signs of Lupus. People may not even test ANA positive and yet still be told they have lupus. I still don't test positive for ANA but my doctor diagnosed me. I did, however, have the malar rash, fatigue, and extreme joint pain. I was diagnosed with both SLE and RA. I do test positive for scleroderma and RNP, but not ANA. I also noticed that since my diagnosis in Dec 2011, that my symptoms have become a little worse. I don't think it's psychological as the pain is significantly more intense. But, it lets up and sometimes I have good days and sometimes I am in bed. I'm just keeping my fingers crossed that I can still stay at work. I had a lot of PTO saved up so it hasn't really become an issue yet with me taking time off for feeling too much in pain. I hope you are getting the right treatments!

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