Myasthenia gravis

steff06
steff06 Online Community Member Posts: 1 Listener
edited November 2018 in Everyday life
Looking to talk and get information from people with Myasthenia gravis. Did you get told your a drama queen or back stabbed by what you thought were friends? Do you get pip? 

Comments

  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,602 Championing
    Welcome to the community @steff06
    Im sorry I dont know much about Myasthenia gravis, it sounds like you have had a tough time with the people around you.

    PIP is not about the impairment but how it effects you on a day to day basis, you can fill in a PIP self test here to see what you could potentially score.
  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,602 Championing
    Hi @steff06
    Im not sure if you have seen this already, but there is a website about Myasthenia and it also has support groups, :)
  • littlechef
    littlechef Online Community Member Posts: 71 Contributor
    Hello everyone I was just wondering if anyone is still here with myasthenia gravis that wants to chat.? 
  • littlechef
    littlechef Online Community Member Posts: 71 Contributor
    Hello Cressida
    Thank you for your message , over the years I have had stroke like symptoms with the dropping mouth on the one side also my eye taken into hospital had tests and send home then one day I was not feeling very well again I went to A&E but this time a doctor tuck great interest in me and he said you have Myasthenia Gravis but No one will hear me out so sorry .
    I have been feeling very tired for over a year and my doctors tuck no notice just blood tests but all come back clear .
    I Also went to see an ENT  doctor no arranged for me to have some tests on my mussels that test come back.positive but my neurologist will not commit her self to Myasthenia Gravis for some time I have been having breathing problems I can just get out of breath even when resting , my neck cracks when I move my head my head feels heavy I have dizziness daily and some days feel faint .My neurologist says you don't the them symptoms with MG.
    But everyone i talk to says you do even Myawere support tells me you .
    I should be having a call next week from her but I will have to wait and see .

    Please keep safe .
  • littlechef
    littlechef Online Community Member Posts: 71 Contributor
    Sorry I forgot to mention have you had problems with memory loss I keep forgetting things what I've done it should be doing even to take my medication Mentinon tablets it's getting worse I don't know what to do .?
  • littlechef
    littlechef Online Community Member Posts: 71 Contributor
    @Cressida
    Thank you for your message my neurogest should be calling me next week but to be honest I don't have a lot of trust in her but my doctor tells me that only my neurogest can help me my breathing is not the best keep getting breathless so I do hope she does call me. 
    Thank you once again take care. 

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