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Dystonia Society
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Living with Cervical Dystonia

Same as me...I’ve had EMG and every medication under the sun, including liquid morphine. I wanted to end my life but I have 3 beautiful children and an amazing family. I am still in dire need of help as nothing works and I became addicted to morphine, tramadol and Diazepam which made things even worse as my Cervical Dystonia is at 85% left, I am an extreme case and lost everything in my life....there is hope. I’ve been seen by the best at St. George’s in Tooting and even they could not help me. I have been reffered to a movement specialist. I saw Dr Jo Flowers for EMG Botox who was absolutely lovely but after maximum dose I had trouble breathing and swallowing so she has reffered me on to a professor of neurology movement....I am at the end of my teather but you must understand it is a long journey and you have to believe you will get better. I lost my job, ant drive, can’t turn my head, lost 3 stone, cried for weeks and I am a very confident 42yr old male. I am still up and down....but I still have questions and have tried every drug anyone will mention (trust me, I’ve had everything) and nothing has worked. I am now being looked as from a cause point of view, not an effect....the effect is my neck rotation and jitters, the cause is my brain making it do this....and I’m dying to know why as it’s ruined my life and I want it back so badly. I’ve been rejected from interview after interview and I’ve always had very good jobs, it can only be my physical appearance, I just can’t prove it. When I was diagnosed funnily enough my work had a restructure and I was offered a ‘package’...I took them to caught and won under unfair dismissal. I need the neurologists to fix me or or I don’t know what I’m going to do....I am currently waiting for an appointment now. I truly wish you luck and much love in your quest for wellness....I’ve been through everything you have. I’m really happy to talk to anyone over the phone if they want my number and on the flip side....does anyone have any advice for me? Either way this is a horrible condition I wish I never got for no reason! Love and light to you ALL. Tim.

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I have heard of 2 medical procedures...both very dangerous because of your central nervous system and know of one person this has worked 100%. It involves electrodes in the brain which block the signals, this also requires a battery implant....the other is simply cutting the nerves but these are very dangerous. X


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