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Hi I’m Peter and I have cervical Dystonia [Anterocollis] I was diagnosed in 2010, my symptoms started in 2001 with neck pain,
thought that I had just pulled a muscle or something and had lots of physio/massage,acupuncture,etc but it kept getting worse,for many years my vocation involved a specific repetitive movement and the turning of my head, I made adjustments to the way I worked but the pain persisted. In around 2008 I noticed my head was starting to turn to the left and my right Sternocleidomastoid [ i had no idea what it was called at the time ] seemed to be getting larger,eventually had the diagnosis of CD, started having Botox every 3 months initially with some relief however I’ve decided for the moment to stop for the following reasons.
swallowing, chocking issues,disproportionate muscle growth in some muscles as opposed to others causing shoulder abduction, posture problems,worsening damage to the cervical spine [may or may not be the result of botox. I get an MRI done around every twelve months and It’s gone from small bulging of C5/6 to all discs, some pushing on my spinal cord resulting in pins and needles,numbness/weakness in hands feet.Botox is a godsend for a lot of people but I think because I have Anterocollis, lots of muscles involved it’s not working.
I’m trying to manage by doing lots of stretching,exercise,remedial therapies and as little medication as possible.
In lots of ways I’m lucky, I don’t have significant tremors associated with Dystonia.
A big thank you to Kerrie, Laraine ,robyn and others for all that they do for fellow Dystonians.