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  1. #11
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    Hi Suzy,
    Welcome to WHL. We all understand what you are going through - it seems that rheumys are arrogant the world over.
    It makes sense to me that the meds that you are taking would change the results of the tests. I've been told the same sort of things.
    Like you, I was diagnosed with MCTD (Lupus, Sjogrens, RA, Psoriatic Arthritis, with Raynauds, Meniere's & Spasmodic Dysphonia thrown in).
    I had a great rheumy in the state of Texas, who was treating me for those. We moved to California, and the new rheumy just doesn't agree because her blood tests show that everything is fine. DUH! Doesn't that mean that the meds are working?
    Sometimes I wonder about the intelligence of these so-called specialists.
    Good luck with getting some information.
    Hugs,
    Marla

  2. The Following User Says Thank You to magistramarla For This Useful Post:

    Saysusie (01-22-2012)

  3. #12
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    Yeah in the UK it's really frowned on if you try to change dr & youre made to feel bad.

  4. #13
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    dear suzy if you are not happy with the treatment you are getting you have every right to look else where some doctors can be so full of themselves they do not want to accept they could be wrong. it is your body remember not there,s my blood tests results go up and down this can be because you are flaring or because medication is working says my rheumi i am lucky i found a good one but it took six months and going to a lot of arrogant ones before i found the right one. you do what it is best for you hugs kim

  5. #14
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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    I am glad to hear that your GP, at least, has enough common sense to know that your medication may be the reason for your "normal" test results (too many doctors refuse to acknowledge this fact). The fatigue that is part of auto-immune diseases, especially Lupus, can be a truly debilitating fatigue that affects our lives in many ways. Add to this the fact that you are still working, dealing with the stress of the job and illness...it is understandable that your fatigue may be more consuming than most. However, I strongly agree that this is something that must not be ignored and you may have to insist that your doctors continue to test you in order to find the underlying issue here.
    One of the things that we have learned is that we must be our own health advocates and we must stand up to our doctors, not allow them to dismiss us, and insist that they take all appropriate actions to help restore us to some form of functional health. We are also here to help you as much as we can...I wish you the very best

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

  6. #15
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    Many thanks all. I did have some interesting information from the lupus nurse at St Thomas' in London. She said that the standard for checking disease activity in Lupus is ANA not ESR as ESR can be affected to easily by other factors and also some peoples ESR never changes... So getting somewhere just slowly. It seems to be a week between each appointment at GP and blood tests etc.

    It's my 40th this year and my friends keep asking if I'm having a party. Yet I haven't got the energy to organise anything and also if I'm honest the idea of staying up beyond 9pm any night isn't good at the moment

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