Myasthenia Gravis

nebulrwas
nebulrwas Community member Posts: 11 Listener
edited September 2023 in Talk about your impairment
has anyone been diagnosed with Myasthenia Gravis or know anything about it ?

Comments

  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,866 Championing
    Hello @nebulrwas

    Welcome to the community! :) 

    The NHS have a page on Myasthenia Gravis that I would encourage you to read. Can I ask, are you looking for more support for yourself? for a family member or friend? And if you have any other questions, please don't hesitate to ask. Hopefully we can point you in the right direction or have members in the same situation help. 
  • nebulrwas
    nebulrwas Community member Posts: 11 Listener
    its for myself. i have had Myasthenia Gravis for a year now and am no better off now than i was a year ago.
    it would be nice if any members who have M.G. have any tips ?
  • Albus_Scope
    Albus_Scope Posts: 7,981 Online Community Team
    Hey there @nebulrwas and a welcome from me to the community.:)

    I noticed this post had gone a bit quiet, so I just wanted to give it a bump up on the community page and check to see how you were getting on with your quest for answers?  
  • nebulrwas
    nebulrwas Community member Posts: 11 Listener
    unfortunately Myasthenia Gravis is a very rare disease, so no, i have not heard from anyone for any tips or advice.
    its just so debilitating both physically and mentally depressing. after suffering with it for a year now and being no better off its hard to find any positives or see any light at the end of the tunnel. so i just carry on the same as everybody else does with there problems. good luck to everyone.
  • Loisanne
    Loisanne Community member Posts: 4 Listener
    Hi @nebulrwasnebulrwas said:
    its for myself. i have had Myasthenia Gravis for a year now and am no better off now than i was a year ago.
    it would be nice if any members who have M.G. have any tips ?
    how are you coping now? Would really like to hear your story.
    I’ve just been diagnosed with myasthenia gravis and have yet to see the neurologist. I have been given pyridostigmine by A &E but I’m nervous taking it as there is no consistency with effects. I’m very unsure of what to expect long term and totally floored by this diagnosis. 
     Was wondering if you could give me some insight into your experience please? I realise you’re still trying to find help yourself but sharing your experience  could help me enormously and maybe as I gain more understanding we can help each other? Blimey that sounded ok in my head but reading it back I sound patronising, I really don’t mean it to and genuinely believe it. 
    Thanx for reading.
  • andyt60
    andyt60 Community member Posts: 3 Listener

    Hi. i have had Myasthenia gravis for about three years now, had a recent relapse, or crisis as they call it, June this year spent seven days in ICU and another two weeks on wark. Most problems occur when staff just do not know much about this disease, my biggest problem is with physco who seem to think that just getting up and walking i will feel better, thankfully nurse on duty had a better understanding, no neurotransmitter no movement lol

    But am feeling better now, on so many drugs that I rattle a lot

    My condition does improve over time but it can be triggered

    I believe i have had this for far longer than my first crisis about three years ago

    since then i have developed so many other conditions and am now considered a complex case

    I hope you are learning ways to cope and get the drug right

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