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Thread: What next?

  1. #1
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    Default What next?

    Hi everyone, my name is Tocki and I am just so confused right now and need some guidance on my next step.
    About 10 years ago my hair started to fall out in patches but would grow back in, I started having pain throughout my entire body and was tired all the time. Doctors always said take ibuprofen or naproxen for pain and really just discounted my pain as "in my head". So I pretty much gave up until recently. I went to a new doctor because the pain in my joints is unbearable at times, the bald spot in my hair can't be hidden (i've been wearing hats and praying the hair will grow in soon) and my fatigue is hindering me from getting anything done. I work, go to school and have 3 kids. I am flunking my classes because I am soooo tired :0(

    I had a blood test for rhuematoid arthritis that came back negative and a positive ANA last month and a urinalysis yesterday that came back negative also. Do I continue to insist that further test be done, or is it pretty certain that its not Lupus? I am so frustrated and tired of these symptoms, I just don't know what to do, and this new doctor seems not to be really concerned about all my symptoms. I had to insist that we do the urine test to be sure, she didn't even want to do it. Any advice would be great!

  2. #2
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    Hi Toki, you could ask yor doctor to run some more tests. Perhaps what you should do is to document all your symptoms and how it is affecting your life. Make a copy for yourself as well. Keep a note book in your bag and next to your bed where you can jot down anything when you think of them.

    Have you had your full blood count done to test you for anaemia? As for your schooling, can you take less classes so you can focus on a smaller number and get higher marks?
    Diagnosed with Lupus - 22 June, 2010

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    Hi Linda,
    I started a journal for my symptoms a few days ago, I go back to my doc in June so I will take it with me then. I am only slightly anemic and have a vitamin D deficiency, for which I take iron and doc has me on 50,000 units of Vitamin D. Its embarassing to admit that I am only in school part time and still I struggle to keep up. I was able to move my work shift so that I could get more study time, but most times I fall asleep in my books and its so hard to process information when I am tired. Seems like everything is a blur and I can't remember anything unless it write it all down.
    What other test should I ask for? Also, she mentioned sending me to a rhuematologist but I wonder if she will since the urine came back negative.

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    Perhaps you could phone your doctor and ask to be sent to a rheumatologist because if you wait until June to ask, then you will be waiting another couple of months. The Rheumatologist will know what test to run
    Diagnosed with Lupus - 22 June, 2010

  5. The Following 2 Users Say Thank You to Linda From Australia For This Useful Post:

    steve.b (05-17-2011), Tocki (05-17-2011)

  6. #5
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    As for your study, set a timer to study for 30 minutes, then have a 15 min break. Then get back to it again for another 30 minutes. Then have a 20 minute break, 30 minutes study, 30 minute break. 30 minute study, then take an hour break. That way you can focus all your attention on your study instead of trying to sustain quality time.

    There is nothing to be embarrassed about not coping with studying part time. Next time you enrol, see if you can cut down your sudy load if you are not coping at the moment, then you can perfect a good study routine. When you have worked out a good routine, then you can enrol in more units later on. What are you studying?
    Diagnosed with Lupus - 22 June, 2010

  7. The Following User Says Thank You to Linda From Australia For This Useful Post:

    BonusMom (06-21-2011)

  8. #6
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    Thank you for your help Linda! I will come back and update my progress :0)

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    Hi Tocki,

    Welcome to WHL and lovely to have you with us.

    From what i've just read get on the phone to your doctor and persist on being sent to a rheumo, if you've not got lupus you've got a stong possibility of some under lining Autoimmune disease, as they'll run blood tests and most likely do x-rays.
    I always mention this because it is important if you do have Lupus in your system and blood reading's come back negative it's a known fact Lupus fluctuates the blood, so a reading could be positive and show negative.

    We all suffer with the fatigue and i had the patches in my head in the past the size of a 50p they've grown back but not my natural colour but grey but it may not work with you like that because i'm 42 but please be persistent with your doctor.

    ((Hugs Terri)) xxx

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    Linda, I will give this a try. i am studying business management and expect to be finished in March of next year. I am so close, I really don't want to cut back on classes. I may have to though

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    Thank u Terri, The bald patches are the worst part because its the one thing I can't really hide. I usually use black eye pencil or a sharpie marker to hide them.

  12. #10
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    Quote Originally Posted by Tocki View Post
    Thank u Terri, The bald patches are the worst part because its the one thing I can't really hide. I usually use black eye pencil or a sharpie marker to hide them.
    I was told to use those Tocki because my hair was very long and the first patch developed by my right ear as i used to tuck my hair up and then when more lose hair was coming out, i skinned it onto grade1 and that's when i saw the 50p patches, i've let it regrow back into the bob but when i have shower the plug hole is dead full.lol

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