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Thread: Frustrated wait..

  1. #11
    Forum Member
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    I suppose the simple answer to that is I am naive and foolishly expected that paying a private mnd specialist for a consultation, along with all the tests carried out by the NHS over 2 months as an outpatient and 3 weeks as an inpatient on a neuro ward that has its own mnd specialist would help my consultant arrive at a diagnosis.
    So having seen 2 mnd specialists who have both told me it can't be anything else, yet not giving me a diagnosis doesn't inspire me to spend more money going to see a different mnd specialist further away??
    This is exactly why I am so frustrated....

  2. #12
    Forum Member Ellie's Avatar
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    Oct 2012
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    I won’t keep badgering you after this

    Quote Originally Posted by 4x4hawk View Post
    3 weeks as an inpatient on a neuro ward that has its own mnd specialist
    Oh, I didn't realise you were on a neurology ward with an MND Consultant, perhaps the hospital is one with an MND Clinic (MND Clinics are part of the NHS by the way)

    Quote Originally Posted by 4x4hawk View Post
    So having seen 2 mnd specialists who have both told me it can't be anything else, yet not giving me a diagnosis.
    If both Neurologists are insisting you have MND but neither will say so, find out what is stopping them from confirming the diagnosis, what part of the puzzle is missing - you deserve to know that. This is 2020 not 1920, doctors can’t withhold information, nor are you 4yo.

    Again, best wishes, stay safe & stay well.

    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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