So glad to find dystonia society on heath unlocked
I've been suffering with dystonia majorly since 2012
I as I now know it have generalised dystonia.
It started with a tremor, I am particularly suffering with cervical dystonia (spasmodic torticollis) for which I have been having botox injections at charring cross every 3 months to stop me looking like the exorcist.
My hands cramp and claw up which makes alot of daily tasks sometimes impossible
My left foot and leg join in on occasion making walking / standing challenging all of which comes in episodes but I find my twisty torso currently to be really disabling.
I take trihexiphenydle, pregablin, clonazepram.
My dystonia was apparently caused by an autoimmune disease called antiphospholipid syndrome which as it took so long to diagnose damaged my brain leaving me with dystonia, Chorea and a painful involuntary movement disorder.
I am now a warfarin Lifer due to this.
Over the last 4 years my life is now unrecognisable, not working or driving anymore and I've become extremely reclusive avoiding everything.....
Boy I sound depressed but I'm having one of those pick and mix days thanks to dystonia you just don't know what your going to get that day
Thanks for being here