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Thread: Hello

  1. #11
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    Finally have my neurology appointment at the end of this week. What sort of questions do I need to be asking? I've waited so long I really want to make sure I utilise the time fully.

    Thank you!

  2. #12
    Forum Member Terry's Avatar
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    Hi Lottery,

    It's a good idea to right your questions down so you make sure that you cover all of yours.

    It is good to take someone in with you or ask to record it as it might be hard to remember everything.

    I would ask, what he/she thinks it is?

    How long will it take to diagnose?

    What can be done to help my problems?

    Can I see the nuro nurse?

    What is the next step?

    Love Terry

  3. #13
    Forum Member Ellie's Avatar
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    Hi Lottie,

    The Neuro will have a copy of your EMG results and you should ask for an explanation of these. If you're not given a copy of the EMG summary findings, take a photo of the one the Neuro has, because once you leave, you're likely to forget the technical jargon!!

    The Neuro will do a Clinical Exam and may order different diagnostic tests if necessary.

    As Terry said, take notes and if you don't have answers, ask "what happens next?"

    Good luck,
    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  4. #14
    Forum Member nunhead_man's Avatar
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    Hi Lottie

    I like Terry calling you "Lottery" as that is what it is!

    Re questions you might like to ask in addition to Terry's suggestions what tests he or she is going to recommend you have?

    The list of things I've had when they were trying to work out what I had included;

    * a scan of my affected arm to check if there was any of the carpal tunnel they had wrongly diagnosed

    * MRI to check my upper spine to see if nerves might be jammed

    * spinal tap to exclude Multiple Sclerosis and check for inflammation which might be jamming up nerves - I have had Bell's palsy within the last five years

    * electrical tests by an expert consultant who could tell what was connected to what by sticking pins in me and running currents between them

    * sophisticated Consultant use of the rubber reflex hammer which enables the expert user to work out which nerves are working and which are not in's get some indication of the strength of the reflex and therefore the strength of the connection

    * cognitive test to see if memory was better than intelligence predicts suggesting loss of brain power around where the motor neurones die in the cerebral cortex

    Good luck with your appointment!

    Warmly

    Andy
    Last edited by nunhead_man; 17th May 2018 at 08:58. Reason: missed info
    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.

  5. #15
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    Thank you everyone for your advice and support. Notebook is ready!

  6. #16
    Forum Member Terry's Avatar
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    Sorry Lottie/Lottery;

    Predictive text strikes again. That's funny Andy.

    Love Terry

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