Recently diagnosed with mayasthenia — Scope | Disability forum
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Recently diagnosed with mayasthenia

hondon
hondon Community member Posts: 1 Listener
edited July 2020 in Disability rights and campaigning
I have recently been diagnosed with mayasthenia. I am 75 years old. I would like to hear about other peoples experiences. 
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Comments

  • leeCal
    leeCal Community member Posts: 7,550 Disability Gamechanger
    Hi @hondon just wanted to say welcome to the community ?

    “This is my simple religion. No need for temples. No need for complicated philosophy. Your own mind, your own heart is the temple. Your philosophy is simple kindness.” 
    ― Dalai Lama XIV

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  • steve51
    steve51 Community member Posts: 7,153 Disability Gamechanger
    Hi @hondon

    Good Morning it’s great to meet you today.

    I am one of the Community Champion’s here at Scope.

    @steve51




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  • chiarieds
    chiarieds Community member Posts: 15,465 Disability Gamechanger
    Hi @hondon - & welcome to the community. We have one person that I am aware of who is waiting for testing for Myasthenia gravis (MG). I'm not sure if they're active  at the moment tho. If @Funboy1 is around he may get in touch.
    Meanwhile I wonder if you have looked at a MG support website. There is the following: https://www.myaware.org/
    Please look around the forum & join in with any discussions (there are links at the top of this page) as well as chat here any time. :)
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  • janer1967
    janer1967 Community member Posts: 21,964 Disability Gamechanger
    Hi @hondon Welcome to the community from me too, glad you have joined us and hope you find others who can relate

    I look forward to seeing you around
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  • Adrian_Scope
    Adrian_Scope Testing team Posts: 9,787 Scope online community team
    Welcome @hondon! :smile:
    Community Manager
    Scope
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  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    Great to have you with us @hondon! 
    Scope

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  • Oxonlady
    Oxonlady Scope Member Posts: 566 Pioneering
    Hi hondon, I understand your concerns about being diagnosed with a rare condition. Hopefully you will garner more information here and from the doctors treating you. 
    Your post has brought back happy memories for me. In the late 1990s I worked briefly as a research assistant to Professor John Newsom Davis, who was a wonderful man and led research into Myasthenia Gravis in Oxford. I remember that some of the patients had their thymus glands removed but I don't know whether this procedure is still done. 
    I am assuming that you are now on medication?
    Wishing you all the best in managing your condition. 
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  • Leebrom
    Leebrom Community member Posts: 4 Listener
    In my oponion I would say total rest get as much as possible in the early stages let the meds do the work for you m8
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