Does anyone here have dystonia oromandibular?

angel56
angel56 Online Community Member Posts: 4 Listener
edited January 2018 in Families and carers
dystonia oromandibular.Does anyone else have this disability..?thanks/

Comments

  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,602 Championing
    Hi @angel56

    Welcome to the community, sorry you havent had more of a response about this.  Can you tell us a bit more about it?

    There is some info here on the Dystonia Society website.
  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,761 Championing
    Hi @angel56, how are you doing?
  • angel56
    angel56 Online Community Member Posts: 4 Listener
    Hello pippa thanks for asking ive been really ill of late but am having loads of tests done to check stuff out.bye carollx
  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,761 Championing
    Sorry to hear you've not been well @angel56, and wishing you all the best for your upcoming tests. Do let us know how you get on and if we can be of any assistance!
  • JennysDad
    JennysDad Online Community Member Posts: 2,290 Championing
    Hi @angel56
    I know the last post here is from January, but I'm hoping you're still in touch so that I can ask if you have contacted the Dystonia Society, at https://www.dystonia.org.uk. Among other things, they too seem to have an online community.
    Warmest best wishes to you,
    Richard
  • lindadenise
    lindadenise Online Community Member Posts: 302 Empowering
    Hi the Dystonia Society are really helpful they have been excellent with me i suffer from Cervical Dystonia. I have spoken to them and they are doing a letter for me to send to DWP for my MR.

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