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Thread: Update on my muscle disease

  1. #11
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    I am so sorry about the diagnosis and prognosis Linda. Please enjoy every second now and get the most out of life.

    As for your doctor.....I am in absolute shock. What a jerk! I hope that you can forget the things that he has said and listen to the doctors who know you well and hopefully to a good specialist who you will soon meet. You deserve support, explanation and help. Does your hospital/specialist have a social worker associated with them. That's the way it works here...but sometimes the patient doesn't know the social worker exists. If there is one, he/she could help you navigate the work thing, and hopefully help open doors to support in your area as well as assistive devices, etc that you may need down the line and for which there may be allowances, or bursaries (wrong word but I hope you get my meaning.)

    Huge giant hugs from across the ocean!

  2. #12
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    hugs

    hugs

    hugs

  3. #13
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    i was talking to cherie about your update.

    she reminded me that a doctor is just a doctor.
    they do not know everything.
    cherie recently saw a specialist about her vision problems.
    the doctor was early middle aged, and willing to learn.
    but she just had no idea about cheries problem.

    as we say here often.
    there is nothing wrong with a second opinion.

    if they can help make your life less painful...........

    you are worth it.

  4. #14
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    It sounds like your doctor has the "God" complex and, since he can't cure you, it must be in your head. What an idiot! For him to write down a dx and instruct you to "Google" your diagnosis, is nothing short of ludicrous.

    It's not in your head, Linda. We know it. Your employer knows it. You know it, and, more importantly, your other doctors know it.

    Hang in there, Linda. Help (or at least a diagnosis) is on it's way.

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