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Recently diagnosed with mayasthenia

hondonhondon Member Posts: 1 Listener
edited July 2020 in Disabled people
I have recently been diagnosed with mayasthenia. I am 75 years old. I would like to hear about other peoples experiences. 

Replies

  • leeCalleeCal Member Posts: 3,711 Disability Gamechanger
    Hi @hondon just wanted to say welcome to the community 🙂
  • steve51steve51 Member Posts: 7,175 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




  • chiariedschiarieds Community Co-Production Group Posts: 9,216 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. :)
  • janer1967janer1967 Member Posts: 11,201 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
  • Adrian_ScopeAdrian_Scope Testing team Posts: 8,007

    Scope community team

    Welcome @hondon! :smile:
    Community Manager
    Scope
  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    Great to have you with us @hondon
    Scope

  • OxonladyOxonlady Member Posts: 412 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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