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Thread: Hello, thank you for being such a supportive community

  1. #1
    Join Date
    Feb 2014
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    Default Hello, thank you for being such a supportive community

    Hello, I'm xocharise. I've been experiencing strange symptoms for over a year and no doctors have helped me so I've been doing my own research and Lupus keeps coming up. I went to my first rheumy appointment on Friday finally. She was not helpful either. She said it looks like Lupus, but your ANA was negative so just wait a while and come back if the symptoms still persist. I asked her to please re-do the ANA test because it just doesn't make sense to me. I'm 18, have joint pain, chest pain, swallowing problems, headaches, fatigue, muscle aches, fevers, rashes, brain fog, mouth sores, depression, no appetite, stomach problems, you name it ive got it. But because that stupid test was negative when they did it 2 months ago, she told me to wait a little longer. Sorry but 14 months is long enough. I have a full time job and a one year old daughter and feeling this way with no answers and no one taking me seriously is driving me insane! I stumbled across this website and you all seem very helpful and I am definitely in need of help. It seems the more I try to stand up for myself the more the doctors say "it's probably all in your head". I know it's not in my head. I'm not sure that its lupus but it must be something very similar. Please tell me, was your ANA ever negative? Were there other tests that came up positive? I am anemic (or was) then I took iron for months and now they say I'm not anemic but my red blood cells are still small and my white cell count is low. Along with some other things. C reactive protein was high, sed rate has been steadily increasing from 4, 9, 12, most recently 19 and 20 is considered high. Yet all they will look at is the ANA. How do you handle doctors who don't listen? I've seen 4 doctors, 3 specialist, 2 ER visits. Nothing. Any information or support would be helpful. Thank you!!!

  2. #2
    Join Date
    Nov 2001
    Victorville, California
    Blog Entries
    Thanked 1,128 Times in 743 Posts


    Hello Xocharise;

    The ANA test is one of many tests used to screen for Lupus. A positive or negative result should not be used to determine if a person does or does not have Lupus. If the patient is displaying symptoms of Lupus and the ANA test is negative, most doctors will then run the following tests: Anti-DNA, anti-Sm, anti-Ro/SSA, anti-La/SSB, and anti-RNP, and will also test other abnormalities present in your specific condition.
    There is a condition known as ANA-Negative Lupus and in order to be diagnosed with this, the above listed tests must be positive. It is never critical to say definitively that a given patient does or does not have lupus. What is important is to evaluate your current symptoms, to put your symptoms into an overall context that includes blood tests, duration of symptoms, other illnesses, and medications, and to develop a treatment plan based on the total information rather than on a blood test alone. If you are presenting with symptoms, those symptoms should be treated regardless of the results of your ANA.

    I hope that this was helpful. Please let me know if you need anything further

    Peace and Blessings
    Look For The Good and Praise It!

  3. The Following User Says Thank You to Saysusie For This Useful Post:

    tgal (02-13-2014)

  4. #3
    Join Date
    Jan 2010
    Houston, Texas
    Thanked 1,757 Times in 1,220 Posts


    You poor thing! Sadly we hear your story so often and I myself lived it. I was called "a strange case" because I had more than enough symptoms, a positive ANA initially but my other labs were normal except for inflammation. it took a long time for the blood work to catch up with my body.

    As Susie said, you should at least have your symptoms treated because not doing so makes things worse (believe me... I know). Keep fighting for yourself. You have to be your best advocate. There is no one else who knows what is happening. 90% of us have been called crazy at one time or another.

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~

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