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Myotonic Dystrophy now progressing very quickly

merge61merge61 Member Posts: 5 Listener
edited September 2019 in Disabled people
Hi everyone new to site and Mother to a daughter diagnosed with Myotonic Dystrophy in April at 28 years old symptoms have progressed very quickly and now Neuro wants her to be admitted to carry out further tests as Neuro is worried that more is going on has anyone else experienced severe symptoms so rapidly, Thanks in advance.


  • April2018momApril2018mom Posts: 2,869 Member
    Hello @merge61

    Welcome to Scope!

    You can ring the Muscular Dystrophy UK helpline on 0800 652 6352 or visit the website https://www.musculardystrophyuk.org/ for more information. If you need any support with advocacy, call the advocacy team on 020 7803 4800.

    Hope this is useful. For appointments, my advice is to attend them with a pen so you can take notes and a short list of questions to ask the consultant as well during the appointment. Do not be afraid to ask questions either. I also suggest having a list of symptoms to refer to just in case. Good luck and keep us updated. 
  • merge61merge61 Member Posts: 5 Listener
    Thank You for your reply and for the information have visited musculardystrophyuk.org what is confusing all is the literature describes this condition as slow progressing but in my daughters case her Myotonia has progressed very rapidly in a few months which her Neuro has witnessed hence more tests have been advised MRI of lower spine, more muscle conductor tests etc just wondered had any one else experienced this pattern. 
  • April2018momApril2018mom Posts: 2,869 Member
    Take a pen to the appointment. Also ask the consultant to explain any tests to you clearly as well. Keep asking questions too! 
  • chiariedschiarieds Community Co-Production Group Posts: 9,087 Disability Gamechanger
    Hi @merge61 'The Myotonic Dystrophy Support Group' may be an additional resource. They also have a facebook group with the same name. 

    I hope your daughter's further testing happens soon; the waiting is often the worst bit (for you both).
  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    Hi @merge61 and a very warm welcome to the community, it's great to have you here. I'm sorry your daughter's condition has changed so quickly, how are you doing? I appreciate how difficult this must be to see. 

    Please do keep us updated and if you believe we can support you with something then please do let us know. 

  • merge61merge61 Member Posts: 5 Listener
    Hi it has been a few months since my last post a lot has happened I applied for PIP and my daughter got the higher rate for daily living but standard for mobility ? but we have applied for mandatory reconsideration so we will have to see how this goes, she is now having appointments with an OT who has pushed for her to be seen by adult social services as she has a 15 month old daughter and our family home has become unsafe due to stairs externally/internally also toilets /bathroom is upstairs also and I and her dad still work so she is on her own and finding every day a huge challenge, she had her 1st appointment after a long wait and was advised to put her name down for social housing on medical grounds which I have done but there is also a 6-8 week processing time and could be more due to medical grounds, social services can not put anything in place until she is moved to a suitable property for her as she wants to live as a family unit, at the moment we can not accommodate her partner so they have been living apart, I have also looked into private renting but there is nothing suitable and adaptations can not be made landlords do not want this, she has also applied for Universal Credit which as I speak is being processed - 5 weeks but just for her and the baby as she is not living with her partner , is there any organisations that can help with housing for the disabled as I have been warned that social housing can take years , would she be a priority if so do they put her into bands? and will still have a long wait I worry as her health is on the decline she has Myotonic Dystrophy type 1 and every day her and the baby are at risk. It has been a long journey navigating all the benefit system and filling in numerous forms which she cannot do so I have done this on her behalf.
  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    Hi @merge61, thank you for taking the time to update us. It sounds like things have been really tricky despite making some progress. Is there anything we could help with?

    I really hope things work out for you all soon.

  • merge61merge61 Member Posts: 5 Listener
    Hi Chloe  I am confused at the moment as my daughter has just received her UC statement for this month £222 -£95 deductions because of savings which is below £6000 and no mention of her baby or her LCWWR which she has just received this week, does this get added on for next month or does it take some time as there is no mention in her journal or is the sum above all that she will get not sure how this all works any advice would be welcome.
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,997

    Scope community team

    Hello @merge61. I'm sorry we hadn't spotted your post until now.

    Sadly they do make errors with these calculations and statements.
    If she doesn't have savings over £6,000 you need to get in touch with them to discuss this. It sounds as though they haven't verified her daughter onto her claim. Have you managed to get this resolved? 

    Senior Community Partner
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