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Thread: Hi and I am confused/scared

  1. #21
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    Hi Ellie, off to Prof Tabot today so hopefully I might have news later

  2. #22
    Forum Member Ellie's Avatar
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    All the best Glos.

    Hope you get even an inkling as to what's going on with you.

    One thing to remember is that you're going to a very good & experienced Neurologist, which is great.

    Don't feel foolish in taking notes during the appt - often what was discussed is forgotten as soon as you walk out the door, if you're like me anyway!!

    And if you've questions, write them down so you don't forget them.

    Best wishes.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  3. #23
    Forum Member Gillette's Avatar
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    All the best for your appointment, Gloslad.
    Dina


    Trying to keep positive, but not always managing.

  4. #24
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    thanks, my wife has a million questions for him

  5. #25
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    thank you

  6. #26
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    Good Luck today Gloslad,

    I really hope you get some answers to your questions. These appointments are so stressful so as Ellie says, dont worry about having your questions written down.

    Love Debbie x

  7. #27
    All fingers crossed for you today.

    Whatever happens, you're talking to the right guy.

    Doug

  8. #28
    Forum Member Kayleigh's Avatar
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    Nov 2018
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    Dear Gloslad,

    I hope everything went well at your appointment this afternoon. Hopefully the neurologist had some answers for you and will be helpful in quickly finding a diagnosis for your symptoms, if one hasn't been found yet.

    Best wishes to you and your wife,

    Kayleigh

  9. #29
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    Saw Prof Turner, a lovely guy, he has diagnosed PLS which ,although not unexpected, to hear the words was a hammer blow. Saw a nurse afterwards who was also lovely, but to be honest was all a bit of a blur. Back to see him again 3 months time.

  10. #30
    Forum Member Ellie's Avatar
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    Oh Glos, I am so sorry and can understand why it's all a blur for you and probably for your wife too.

    It'll take a while for it to sink in and the fog to clear, so I won't overwhelm you by saying anything else for now except that we're here to help and support you both.

    Big hug.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

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