Newly diagnosed myasthenia gravis

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  • #179831
    Newly diagnosed myasthenia gravis

    I am 42 year old female and recently been diagnosed with myasthenia gravis. My symptoms started in April this year with one eyelid droopy, which progressed to my other eye, which at one point both eye would not stay open. I was originally seen by eye doctor who initially suspected mg, who referred me to neurologist where I had blood tests, cr thorax scan, mri, angiogram of my brain. My symptoms progressed very quickly and spread my weakness in my legs and arms. I am currently on 60mg od predisolene and 90mg of pyrodistogime. I have already had ivig treatment fir two days, which initially helped my eyes, but seem to make my legs worse. My balance got so bad I had to purchase a mobility scooter and a frame to get around as I was so unsteady on my feet. My balance got so bad that whilst on my way to nerve conduction studies appointment at hospital 2 weeks ago I lost my balance and my right leg gave way, which caused me to break my ankle in 2 places where I had to have surgery. I am currently in a cast, and will have boot on Tuesday coming. Needless to say I’m feeling very anxious due to weakness and not having any strength. I am trying to come terms with all this. Any advise tips are welcome.
    Kerry

    Kerryplindsay
    Participant
    Posts: 0
    Joined: 21/07/2019
    #179842
    Reply To: Newly diagnosed myasthenia gravis

    Hello and welcome to the forum Kerry. That is indeed a huge burden to carry on your shoulders, especially when you have not expected it. So far all the correct things have been done via the medical services. you have a diagnosis and a treatment. But then you are thinking, I believe, as to how to deal with its affect on you. There is no easy answer. For me, when MD finally got its grip, I was very angry. I lost my job of thirty three years, and that was just the start. As time went by and I lost my other career, I began to realise that I could not beat it, there is no cure for MD. But I could accept and embrace it. From then on I found dealing with the consequences so much easier. I have learned not just to adapt, but also to anticipate changes and plan ahead for what may come. But what I think is perhaps the most important point, is that you must keep yourself focussed and occupied. Huge danger lies in sitting in a chair bemoaning your situation, why has God done this to me, I deserve better etc. Because of my condition (FHSD), I have taken on a new tack in life. I have met many beautiful people whilst getting my treatment, the staff and other patients, that have brightened my life up and given me a much more positive view on the situation. Getting involved with activities that help others has made me feel useful again.
    You did not mention how the condition is affecting you in your life. Do you work for example, or have children. Each of our stories are different, and we all deal with the things that affect us in different ways. Often you may feel terribly alone as I did initially. However once I found this forum I knew I wasn’t. Please feel free to come back with questions, concerns or even just to rant. It will be great to hear from you.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #179843
    Reply To: Newly diagnosed myasthenia gravis

    Thanks for your reply, it’s nice not to feel alone. The frustrating thing is I started a new job as reception manager in hotel in february, I love my job and luckily they have been great and supportive until now. My biggest set back now is that I have broken my ankle so I’m non weight bearing for 6 weeks, it’s just one thing after another. My partner has been great looking after me, and I don’t have any children to worry about.
    I will get there slowly but surely, I just need patience which is not my strong point.
    I’m now in the process of completing pip assesment form, any tips or advice?

    Kerryplindsay
    Participant
    Posts: 0
    Joined: 21/07/2019
    #179864
    Reply To: Newly diagnosed myasthenia gravis

    That is indeed frustrating, butI am so glad that your employers are supporting you. Many do not. PIP is a daunting task, and the simple advice I would offer, although there is also much to be found in this forum, is to mind your words. So often these applications are won or lost on how you fill out the form and what you say, not necessarily on the state of your health.
    This site, https://politicsandinsights.org/2013/04/21/1560/ has been found to be useful by some although it is politicised to some extent so I hope it will not violate forum rules. Another useful site, even if you are not being assessed by ATOS is this site https://politicsandinsights.org/2013/04/18/what-you-need-to-know-about-atos-assessments/.
    Please also talk to MDUK. They have vast experience in these matters and can help substantially.
    Finally be honest, not just with your answers but mainly with yourself. So many times we all say, “we can manage” whereas in reality it is a struggle to do things. So pease be honest in your assessment of your capabilities, then reflect that accurately in the form.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
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