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Thread: To be or not to be

  1. #1
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    Default To be or not to be

    Oh how I have ran the gammit, and have jumped through hoops hoping to have just one doctor here in the states to say anything that can explain anything about Lupus! When I go to see the Dr anymore here where I live it is for individual physical problems I am having. For almost 10 years I have fought this disease. I have been to Hell and back physically and mentally! I have learned my confidence in our medical system is shot to hell. I hear it is common for Lupus patients to feel the way I do. It is frustrating enough to fight a phantom like Lupus, then have to fight to get any answers to your questions is not right!! What experiences has anyone else had? I gave up on our system has anyone else given up or about to?

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    HOPENFAITH,
    You are not alone... but if you give up then what? Sometimes they (med. professionals) are lacking some much needed knowledge and skill But we have to keep looking. I respect the doctor that says 'I don't know much about Lupus" so much more than one that tries to make you believe he does know when he hasn't a clue. Luckily I have had more of the kind that tell me up front that they don't know much about it. I did find a good Rheumy so there are still a few out there. Keep looking. No one knows you as well as you do. My advice is hang in there and keep looking... the perfect doc isn't out there but there are some that are close. Love your name! Billie

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    Hi Billie,
    Thank you for the encouragement! It can be tiring to go from dr to dr and each one wants to start from square one and repeat test after test. My veins are blown in my arms! I squirm now when I need blood work because it takes many attemps to locate a good vein anymore! I am hoping that a doctor my husband was referred to by his uncle in Mexico can help me. I have heard incredible things about this doctor, but I wont be able to see him until I get some bills paid off first! Maybe that can be my Christmas present! The gift of health. I do have hope and my faith hasn't left me yet, so maybe I'm not a lost cause! lol

  5. #4
    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hopenfaith,

    Heck no, you are not alone in feeling this way. I don't know how many rheumo's I've told to shove off in my life, but it's been many. Right now, I have an excellent G.P., and a very helpful Neurologist, but no Rheumotologist. The G.P. and Neuro manage to help me with my needs, and I've given up on having a Rheumo for now. With all the reading I've done, and all the conversations I've had here over the years, I think I know enough about SLE that I'm my own specialist of sorts. Fortunately, the G.P. and the Neuro are willing to listen to my input, and often times, my conclusions about what's going on with me are fairly correct. They are supportive of patients being educated about their particular condition, and actively encourage it. I joke with them that we should hire a geneticist to clone them, as the world could use more medical professionals like them!

    All I can tell you, is to keep searching. Don't be afraid to drop a bad doc, and hang on to any good one you find. The good ones can be hard to find, but they are out there.

    Rob
    Last edited by rob; 10-11-2010 at 06:25 AM.

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  7. #5
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    Hi Hopenfaith,
    I've got to get my footing with the Rheumotologist yet as i've only seen mine once and that was for an examination and my first lot of blood results but having a learning client with him did'nt help me but like Rob i'm under a Liason nurse with Neurology who dealt with my history under a brain surgeon at the QE Birmingham so she's on the ball with me, i'm under ENT, Dermotology and an excellent GP who's right on the ball with things and now to my list Gynecologist but i don't stand being messed about, got to long an history with Doctor's to stand for that and i'm in like a bull where questions are concerned because they're quick enough of handing out the smarties so they should be quick to throw the answers back.
    I'm sorry to hear your having a bad experience but realy do hope you finally get somewhere.

    Terri x

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