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TOPIC: Alone

Alone 2 years 4 months ago #3700

  • Geekchic
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I am 22 and have just been diagnosed.
I've been recommended carbamazepine by a specialist (neurologist whose interest is in dystonia).
If the drug treatments are so good I don't understand why every dystonia sufferer isn't on them?
Anyone like to enlighten a newbie?
Also I am really scared this condition. which I've had on and off since being 16 but only just been diagnosed with, will stop me from doing things because I am "scared" of a spasm happening.

Feel very down and uncertain of my very bright future now.

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Alone 2 years 4 months ago #3701

  • Hannah.Prime
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We have a Helpline that you might find useful to speak with. It's open Monday-Friday, 10am-4pm. You can call them on 020 7793 3650 or email This email address is being protected from spambots. You need JavaScript enabled to view it.

Hannah Prime
Trust Fundraiser, The Dystonia Society
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Alone 2 years 2 months ago #3763

  • Nic4021
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Hi, I'm newly diagnosed too, generalised dystonia with severe tremor. I also feel very alone and scared of what the future holds. Will I still be able to drive, work, be a good mum? all sorts of questions and thoughts. I've used the helpline, they're a great support, given me advice and sent me information.
I'm not so sure about your medication. I'm on clonazepam, orphenadrine and baclofen which my own GP actually prescribed months ago and neuro told me my GP was on the ball and this is what he'd be prescribing.
Hope you have some answers since your post. x
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