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Thread: Waiting for confirmation

  1. #1
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    Default Waiting for confirmation

    Hello, I've been under observation for about a year now. I am currently on plaquenil and arthrotec 75. I wont know if the the plaquenil will help me until about May, perhaps April if I'm lucky.

    My mother had lupus. My sister has it, but is in remission. A year ago, it seemed I had the on set of arthritis. The problem was it appeared so drasticly and suddenly, my doctor was sure there was something else going on. She also treats my sister and has seen my mother's autopsy report. She refered me on to a rhuematalogist. Because it is in my family I am aware of the challanges I face. I also know that lupus can vary drasticly from person to person.

    There is alot that I do not understand. I guess untill you go through it for your self you have know idea what all is involved. I still do not have a good handle on what type of lupus they think I have. I hope to find out more about the blood tests I've been having on Feb 27th.

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    Hi - I just wanted to welcome you. My thoughts are with you as you await your test results. The wait can be difficult, I know. Many here have waited years to get a diagnosis. Don't despair. The most important thing, I think, is to focus on what makes you feel better. Hopefully, the Plaquenil will work.

    Best of luck to you. Take care. Jana

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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Hello and Welcome :lol:
    Yes, even having family members with lupus does not help you much in understanding how the disease affects you. My daughter's Lupus was completely different from mine and I did not recognize so many of her symptoms.
    Knowing your body and how it reacts is one of the best things that you can do (along with learning as much as you can about lupus, its treatments, its medications, and its co-existing diseases). Joining this forum/family is a good start. We are here to help you in any way that we can and we want you to know that, no matter what your symptoms are, you are not alone!.

    Peace and Blessings
    Saysusie
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    This forum has been great for me, and it will be for you too. It helps to understand the disease better, and understand that everyone is different. It is great knowing there are others out there feeling like you! So, welcome!!

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    Default Thanks for your replies...

    I have another blood test next week and I'm off to see the rheumy on Feb 27th...hope this visit goes better. I'm not very happy with her. She's difficult to get information from. I dont expect answers she doesn't have, but she doesn't tell me a darned thing. I didn't know she was suspecting lupus untill she put me on the plaquenil. Even then she didn't tell me. Her nurse did.

    Sigh...that's one thing I find. My patients level is getting lower. Really I dont know how mom did it. She had the patients of a saint.

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    I always feel that it is better to have a doctor that we are comfortable with. Stress is a bad thing for those of us with Lupus and not being comfortable with our doctor is a major stressor.
    If she is failing to talk to you, perhaps you can get information out of her by asking her questions. For example, if she says she's going to prescribe a medication: Ask her why is she prescribing it? Ask her what does the medication do? Ask her what the side effects are? Ask her what the expected outcome is if you take this medication?
    These are questions that you have a right to have answered. If she continues to not answer you questions, you may have to get firm with her and tell her that this is your body, your illness and you do not intend to grope around in the dark. You have a right to know everything that she knows and everything that she suspects. Failing that, see what you have to do to get a copy of your medical records (also within your rights) so that you can find out what is going on.

    In the meantime, you know that you can always come to us and we will answer any question that you have to the best of our abilities (bearing in mind that no one here is a doctor). I wish you the very best!

    Peace and Blessings
    Saysusie
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