Viewing 6 posts - 1 through 6 (of 6 total)
  • #181067
    Myotonic Congenita

    Hi :new:

    So I went to see neurologist yesterday about how I have always had really tight muscles, funny walking gait, bad posture etc etc I had been worried I had Perphieral Nerve problems or Dystonia (you really shouldn’t google to much).

    Anyway he took one look at my calfs and said I think you have this rare thing called Myotonic Congenita because my calfs and quads are massive, so he got his phone out and googled it :lol: anyway to be fair in some ways it describes me pretty well but maybe not 100% as there are other issues I seem to have which it doesn’t cover.

    I was wondering if anyone else on here has it or knows much about it I would be interested to see if my symptons are similar.

    :ty:

    Phil82
    Participant
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    Joined: 03/02/2019
    #181070
    Reply To: Myotonic Congenita

    Hello and welcome Phil. I am sure someone will contribute shortly. May I also thoroughly agree about Googling too much.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #181076
    Reply To: Myotonic Congenita

    Hi and welcome to forum.

    Is neuro going to test for the condition? If memory serves me right Myotonic Congenita is a form or other name for Beckers MD and characterized by larger thigh muscles that dont relax easily after activity. May be wrong though and agree on playing google doc can be a mind field.

    """""""What doesn't kill you makes you stronger""""""

    Cat (Mod) Cat (Mod)
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #181077
    Reply To: Myotonic Congenita

    Yes they might have to re run the EMG as there was no sign of Hyperactivity which is strange as my calfs twitch/ripple then there might be muscle biopsy, genetic test and failing that a trip to a muscle specalist.

    From what I understand there is a Beckers MD and a Beckers Congenita also Thomsen Congenita. Thomsen is the milder one so I think I have Beckers as I have tightness everywhere and massive thighs and calfs.

    All though this sounds like what I have I do have other issues though :roll: so it would be good to find someone similar to see if they have similar symptons as me.

    Phil82
    Participant
    Posts: 0
    Joined: 03/02/2019
    #181146
    Reply To: Myotonic Congenita

    Are you on facebook Phil82?

    A few really good groups on facebook which might allow you to connect faster with other people with MDs while you wait for a forum response.

    Living with MD
    Breathe with MD

    The above facebook groups are not endorsed by MDUK.

    """""""What doesn't kill you makes you stronger""""""

    Cat (Mod) Cat (Mod)
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #182246
    Reply To: Myotonic Congenita

    Hi so after all the talk of MC I have hit a dead end. The 2nd EMG was all clear so the neurologist says there is nothing more he can do for me as I don;t have a muscle disease.

    Athough the MC did sound a possibility I have always bene convinced I have a central nervous issue but he didn;t agree and said there is nothing more he can do for me although he will refer me onto a muscle specalist for a seond opinion.

    Well I do believe him that it’s not a muscle disease I just think I have other symptons that need further investigation which he is not taking into account.

    I’m off to see a DR Mark Roberts at Salford has anyone come across him before? My worry is I am getting sent to a muscle disease specalist but I wan’t to talk to him about other conditions and is he experienced in a range of conditions.

    :ty:

    Phil82
    Participant
    Posts: 0
    Joined: 03/02/2019
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