Hi, my name is Stillfighting! Does anyone have an understanding of Myasthenia Gravis? — Scope | Disability forum
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Hi, my name is Stillfighting! Does anyone have an understanding of Myasthenia Gravis?

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Stillfighting
Stillfighting Community member Posts: 6 Listener
Hi, I've just joined as I'm keen to find others who are caring for a loved one and to hear from anyone with an understanding of Myasthenia Gravis. My daughter is 16 and has developed severe symptoms recently and is on an urgent neurology waiting list (that doesn't seem to be very urgent!) and I'm going slightly crazy with worry. Xx

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  • janer1967
    janer1967 Community member Posts: 21,964 Disability Gamechanger
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    Hi and welcome to the community 

    I don't have any knowledge of your daughters  condition  but other will 

    Just wanted to welcome you 
  • Tori_Scope
    Tori_Scope Scope Posts: 12,492 Disability Gamechanger
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    Welcome to the community @Stillfighting :) Thanks for joining. 

    I don't have any personal experience of Myasthenia Gravis, so I can't offer any advice in that sense. My understanding is that it's a reasonably rare condition, and that it can affect each individual quite differently- is that right? 

    Have you ever been in touch with Myaware or Muscular Dystrophy UK? Myaware have lots of useful information on their site, along with information about their free helpline, links to support groups, access to a counsellor for emotional support, and details of events. Muscular Dystrophy UK also have links to where you can access some support from those who might be experiencing something similar

    It's completely understandable that this would be a worrying situation. How long has she been on the waiting list for? Are you in regular contact with her GP?

    Just to make you aware, I've moved your post into a different category and added a bit to the title so that it's clearer to other users what your question is. 
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  • Stillfighting
    Stillfighting Community member Posts: 6 Listener
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    Thank you Tori_Scope. I'm going to check out those sites now as I'm worried about her symptoms and how long to wait before getting help. She's just got a date for neurology on 23rd June but thats 4wks since her A&E admission & she's been increasingly debilitated since. 
  • Cressida
    Cressida Community member Posts: 1,018 Pioneering
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    @Stillfighting I was diagnosed with MG around 40 years ago. I was diagnosed through A&E route (by Tensilon injection) after several unsuccessful GP consultations. Fortunately the visit fast tracked me through to Neurology (as an in patient) where I underwent lots of tests including EMG. I was treated with meds, plasma exchange for several months and and then went on to have a thymectomy. The thymectomy was successful as I was able to gradually reduce my meds. I do get symptoms of MG when I am very tired but it is manageable. Please ask any specific questions you may have and I will see if I can answer them. It was quite a rare disease in those days with the numbers being 1:500,000 although I think that's because they are slow in diagnosing it. 
  • Stillfighting
    Stillfighting Community member Posts: 6 Listener
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    Thanks so much Cressida. My daughter is getting symptoms every day now and her eyes droop from any exertion (includung eating) and are now staying drooped for a long time. She may suddenly look up and her eyes are back to normal, but they often droop again soon after. She spent more hours yesterday not being able to open her eyes than having them open. Is this something that you experienced? She can be weak at any time of day. Her speech is increasingly slurred & nasal but she hasn't had trouble swallowing or with breathing yet. I'm worried at her rate of deterioration, especially with another two weeks to the neurology appt. Another strange symptoms is that when she gets the muscle weakness, she feels cold to the point of shivery despite her temperature being ok. It is encouraging to hear that your symptoms are stable. Any insight is gratefully received! Xx
  • Cressida
    Cressida Community member Posts: 1,018 Pioneering
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    @Stillfighting If you know the name of the Neurologist try calling their secretary, the numbers should be on the hospital website. Explain that you are extremely concerned as your daughter's symptoms have worsened since the referral. Agree to accept any cancellation and you may be lucky to get in a bit sooner. The eyelid drooping is the most common symptom. Also the facial muscles are weak so any affects will show there. Just remember that everyone is different and try not to worry about the worse case scenario. I was lucky that my diagnosis was probably before the days of the www so I couldn't find out too much online so did not worry too much. I can remember my mum being more worried than me about it all. 

    I cannot remember feeling shivery at all but it was a long time ago now. I understand what you mean about one minute her eyes are drooping and then they are okay again. My initial diagnosis in the A&E was by a doctor giving me a simple eye test. As I stared at the figures and numbers my eyelids gradually closed up. Then I was fast-tracked through to the neurologists. It was such a relief to finally get a diagnosis. Previously the GP did make me feel like I was imagining things. :( 

    There are a few threads on here relating to MG. If you search for them you could try and resurrect them to see if you get more replies. I'm not sure if I can pm you so we can talk that way which might be easier. You cannot pm me until you have a minimum number of posts. 


  • Stillfighting
    Stillfighting Community member Posts: 6 Listener
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    Currently in one hospital following a rheumatology appt, waiting for an ambulance to A&E at another hospital. The rheumatology tests have set off another MG (?) episode and my daughter hasn't opened her eyes for a few hours now. She's cold and weak, lying in side room, waiting for the ambulance to arrive. Hoping that A&E might get her in front of a neurologist today. X
  • Cressida
    Cressida Community member Posts: 1,018 Pioneering
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    @Stillfighting fingers crossed she will be seen quickly. Best wishes to your daughter. She's young to be dealing with this. Please update us to let us know how things go.
  • Stillfighting
    Stillfighting Community member Posts: 6 Listener
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    We're back home.  They couldn't get an ambulance in the end & we'd waited hours so cane home as she felt a little better. We went to her GP appt by which time her eyes were completely closed again & she felt weak, but were told she couldn't get to see a neurologist before her appt on the 23rd. Unless it affects her breathing or swallowing, we just have to wait it out. It's awful but seems there's nothing else we can do. Xx
  • Tori_Scope
    Tori_Scope Scope Posts: 12,492 Disability Gamechanger
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    That sounds like a very difficult situation @Stillfighting, I'm really sorry. And it's frustrating that they aren't able to see her before the 23rd. Please do make sure that you ring 999 or take her to A&E if her conditions worsen. If you're not sure what to do, you can ring 111.

    How have things been today?
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  • Stillfighting
    Stillfighting Community member Posts: 6 Listener
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    Hi Tori, she's been much better today and has just taken things very gently. I won't hesitate to call 111 or 999 as necessary. I hate feeling like I'm on constant high alert! It's been nice for me & my daughter to have a bit of respite - probably the first day with no major symptoms in over a week. Thank you for your support. Xx
  • Tori_Scope
    Tori_Scope Scope Posts: 12,492 Disability Gamechanger
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    I'm glad that her symptoms haven't been as bad today @Stillfighting :) Yes, it must put you under a lot of stress being on high alert so much of the time. I hope that perhaps you'll be able to access one of the support groups or helplines I linked above. Have you ever spoken to a professional about the toll this is taking on you? It's important that you look after yourself, as well as your daughter.
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  • Loisanne
    Loisanne Community member Posts: 4 Listener
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    Hi there Stillfighting said:
    Hi, I've just joined as I'm keen to find others who are caring for a loved one and to hear from anyone with an understanding of Myasthenia Gravis. My daughter is 16 and has developed severe symptoms recently and is on an urgent neurology waiting list (that doesn't seem to be very urgent!) and I'm going slightly crazy with worry. Xx
    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 yours and your daughter’s experience please? 

  • noman
    noman Community member Posts: 562 Pioneering
    edited December 2023
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    The OP might not your see post as this thread is over 2 years old.
  • Jimm_Scope
    Jimm_Scope Posts: 2,705 Scope online community team
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    While I don't have Myasthenia Gravis, if you like @Loisanne I could talk to you about my experience with immunosuppressant medication and Crohn's disease? I know there's quite some difference between the two, the only similarity being it's an autoimmune disease. But many of the medications are quite similar I believe. I've had to take prednisolone (a steroid) as well as Azathioprine, both I believe can also sometimes be used for Myasthenia Gravis.
    They/Them, however they are no wrong pronouns with me so whatever you feel most comfortable with
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  • nebulrwas
    nebulrwas Community member Posts: 11 Listener
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    i was diagnosed 1 year ago with mg i dont seem to be getting much help on the medicle side and its horrible

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