Focal Dystonia

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caitlinmartin
caitlinmartin Posts: 1 Newbie
in Disability money matters
I'm 16 and have been diagnosed with focal dystonia in my right hand. They have tried Physiotherapy and nothing has worked they are also so convinced that medication wont help in anyway that they wont even let me try it they want to put me straight on to the botox injections (sorry, I don't know if thats what their actually called but you get my drift). The doctors didn't realy explain it to me and i don't understand what will happen if I choose to have it.

I guess what I want is for someone who has had the injections to tell me if it will hurt and if its worth it and what is going to happen because I'm quite scared to be honest.

Comments

  • [Deleted User]
    [Deleted User] Posts: 4,176 Forumite
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    Sorry but we can't give out medical advice on here. We are money savers not Doctors.
  • martinthebandit
    martinthebandit Posts: 4,422 Forumite
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    In my experience Botox injections don't hurt anymore than any other injections.

    As to if they will help your condition I have no idea but if that's what is recommended by your doctor that's what I would go with.
  • Ames
    Ames Posts: 18,459 Forumite
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    I knew someone years ago with dystonia, she needed the injections but couldn't have them. At the time she was told that it was because it was so popular for cosmetic reasons that the price was too high for the NHS and there was a shortage.

    AIUI they're very effective. Given how many people do have them for purely cosmetic reasons they can't be too painful!
    Unless I say otherwise 'you' means the general you not you specifically.
  • citykid5
    citykid5 Posts: 821 Forumite
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    My advise is to contact
    http://www.dystonia.org.uk/
    They have a helpline to give guidance and advise
    They also run group meetings all over the country , so like minded suffers can discuss the best way to live with this lifelong condition.
    Best of luck
  • teddysmum
    teddysmum Posts: 9,471 Forumite
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    It's easy enough to say 'try not to worry', but I can say from experience that procedures are often not as bad as you imagine while waiting for them. If you look on the internet, it's usually the negative experiences which get reported, so giving a skewed view to the bad side.


    My daughter-in-law had botox injections for migraines and she didn't say they were bad.
  • MyOnlyPost
    MyOnlyPost Posts: 1,562 Forumite
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    I would imagine the very brief pain would be well worth the long term effect.

    Very best of luck
    It may sometimes seem like I can't spell, I can, I just can't type
  • suziequ
    suziequ Posts: 73 Forumite
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    My son (25 years old) has botox in his legs as he has Cerebral palsy, he has just had his second dose and he has really seen a difference in his range of movement.

    He tolerates the injections very well and says they are just the same as any other injection.
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