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Post-traumatic dystonia and nerve damage - please help

(8 Posts)
LaCerbiatta Tue 03-May-16 20:05:20

A cousin of mine, 27 yo, was involved in a car accident 18 months ago and was left with what's been diagnosed as Post-traumatic dystonia due to nerve damage. The fingers on her left hand started to curl up and it's been getting worse. She now can't straighten the hand at all and it's affecting also her left foot and her left side in general, can't sit up properly, etc.

This happened in Portugal and she's Portuguese and the drs there have basically told her they don't have much experience of these cases and don't know how to help her. So they want to try a private consultant here.

Does any one have any experience of this and would be able to recommend a good consultant? I'll try calling some dystonia societies I've exist here but would be great if someone had 1st hand experience.

Thank you so much!

LivingInMidnight Tue 03-May-16 20:45:33

You need a neurologist. Try the dystonia society, they might be able to give you a name in your area support@dystonia.org.uk

LaCerbiatta Tue 03-May-16 21:11:07

Thank you smile

LaCerbiatta Wed 04-May-16 20:30:22

Bump

CMOTDibbler Thu 05-May-16 09:09:46

Did your cousin have a head injury in the accident? Dystonia is usually more isolated afaik, and it sounds like there is an issue all down their left side.

Bearsinmotion Thu 05-May-16 09:14:09

Dystonia can be down one side of the body : www.dystonia.org.uk/index.php/about-dystonia/types-of-dystonia/hemidystonia

Never seen a private consultant but several movement disorder specialists on the NHS. Can give you those names if that would help?

LivingInMidnight Thu 05-May-16 16:36:34

Yes mine were movement disorder neurologists too, although they weren't sure if it was dystonia or not.

LaCerbiatta Thu 05-May-16 18:04:43

No, no head injury, just maybe whiplash.

Thanks all I got a couple of recommendations from the dystonia society which I've passed on to my cousin.

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