Is there help

[What1234]

I have read about the university of york england had a promising research study on functional dystonia and fnd. Called the cando study, has anyone heard or know more information about the study. I live in oregon USA. And have been living with functional dystonia fnd myoclonus trigeminal neuralgia for years now and would like some hope thanks.

[Brokendeer]

Hi not under gone the Cando Study, have heard of it. Though often these are just trials with limited funding and are very much classed as a short term study?

I have Motor FND which is all about abnormal movement and many years ago I underwent the standard NHS Multi-Discipline Rehab offered in the UK.

This course basically covered Cognitive Behavioural Therapy, Neuro Physiotherapy and Occupational Therapy - but was not uniquely geared for FND, just general therapies which have shown promise in the past. They all aim to help you self-manage your particular symptoms in everyday life, no miracle pill, no cure promised etc. I was told if you get any treatment within 3 months of onset of symptoms you had a good chance of full recovery, if after 3 months very random results.

Although prior to this Rehab I was placed on a Dopamine-Dystonia (DPD) trial drug to see if my condition was that and not FND. There was some improvement and I thought big success with this medication, but was told if the successful movement was not for 24hrs it did not prove DPD enough to risk the dangerous long term drugs!

Dystonia is classed as a Neurological Specialists remit along with FND in the UK and Dr Mark Edwards (London) has a particular interest in Dystonia in all its forms, he also is very much involved with general FND diagnosis and Rehab. I personally have never met him, but there are so few Neuro Specialists in this field that his name does keep popping up!

Look for the calm in the Storm!