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Thread: Still not diagnosed

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    Default Still not diagnosed

    Hi I'm a 25 year old female living in australia who has been unwell for some time. I have recently got a second opinion and the doctor is pretty sure I have lupus and is sending me to an immunologist to do a full review before going to a rheumatologist. I have a positive ana of 320 speckled, my ESR has been up in the past to high 40's but is currently down. I have been negative fir RF and the other dna blood tests? Main symptoms would be fatigue, sore joints (especially of a morning), hair loss now including my eye lashes and I get mouth ulcers when I'm worse than usual. I have never really noticed the butterfly rash but have been told by my family that it is apparent. I have been unwell for some time now and also have interstitial cystitis. I have had tonsils removed, lymph nodes removed and gallbladder removed all in the past 4 years. I particularly have a flare up when mensturating so it has often been put to hormones. Looking forward to hopefully getting an answer and keeping sane by being a part of this forum!!

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    Hi Pink13;
    Welcome to our family. I am sorry to hear that you've been going through so much. I am glad that you found us and yes, we are here to help you in any way that we can.
    Your list of symptoms are very much like those suffered by many of us here at WeHaveLupus. Only your test results and your doctor's findings will provided you with the answers that you need. There are so many auto-immune disorders whose symptoms mimic one another. However, it does not matter which (or even if) you are diagnosed with, you are most welcome here!
    Are you currently on any medications for your symptoms? If so, are they providing you with any relief?
    Please make yourself at home here, you will find that everyone here is supportive, caring, understanding, and informative.

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

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    Pink13 (05-15-2013)

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    Hi saysusie,

    Thanks for your reply and making me feel welcome. I'm currently on no medication except pain relief when I require for the joints. It does provide a bit of relief which is good. I also try and exercise and do yoga has I find it can help with stretching of the joints and muscles and is a big relief.
    Do you know if my ana result of 320 speckled would be considered high? My first doctor said that people who have autoimmune diseases usually have it much higher than that however the second doctor disagreed and said that I definitely have an autoimmune disease (especially considering I have been unwell and had so many operations at my age) but it is just trying to pinpoint which one. Do you also know if it's possible to have a high ana but be negative for the other blood tests but still have lupus?

    Sorry for all the questions and thanks again for your reply!

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    Hi Pink13,
    I am also from Australia and was diagnosed with Lupus ( 3 years ago ) and Fibromyalgia About 20 years ago. When i first started feeling poorly 3 years ago i noticed firstly the fatigue was terrible, my joints especially the hands and wrists were very painful, sore eyes, headaches, night sweats, fevers, mouth sores, tingling in limbs, chest/lung pain and hair loss.
    My ANA was 1:640 speckled, ESR and CRP always elevated. I have never had a butterfly rash and all my other dna blood tests have always been negative.
    I was started on Plaqeunil firstly ( didn't do much) then onto methotrexate which did help me a lot. I think seeing an immunologist is a great idea as there are so many autoimmune diseases out there they might be able to shead some light on your symptoms for you. Do you have any family history or AI disease?
    If you do have Lupus one of the things i have learn't especially from this wonderful group is that some of our symtoms may be similar and some very unique. It does weird things to us all and no two people are the same.
    I wish you the best with your doctor's and will be interested to hear how you go.

    Sam xx

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    Thanks Sam for your reply and understanding. It says like you have had a rough time as well! My fatigue is probably the worst thing for me. I have always been know to 'love' my sleep but when I wake up in the morning I feel exhausted and I find if i don't get at least 10-12 hours a night then I struggle. I can sleep up to 16 hours though and still feel tired! I don't have any family history of Autoimmune disease however my Mum is currently having issues with her Thryoid and they believe it may be an Autoimmune disease. Thanks again for your message. I will post when I visit the immunologist!

    Thanks

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    Sammy (05-16-2013)

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    Hi Pink13;
    Most labs/doctors consider any ANA over 1:320 to be positive. Yours was 1:640 which most doctors (with knowledge of auto-immune disorders) would consider this to be high and, therefore, positive.


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

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    Sammy (05-16-2013)

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