A Dystonia Disorder story
first sign of anything wrong was waking one morning with my head twisted and leaning back on my right shoulder. thought i had slept awkward, as did my gp. first course of action was to wear a cervical collar for many months which made things worse. then i had physio and also put neck into traction. almost three years later, new physio mentioned it looked like dystonia as all the things tried made my head twist and spasm/shake more. Full examination from neurology eventially diagnosed cervical dystonia.
The following 24 yrs to date, i have been having botox injections every 10 - 12 weeks. sometimes becoming immune to one kind then trying another.
although the dystonia has not spread, my positioning has effected many other body parts. ie. my shoulders, arms, fingers, spine and legs. my tendons were rubbing on shoulders so had surgery last year to move and rep-pin tendons. some improvement.
surgery in left arm to release trapped ulner nerve causing arm pain and numb fingers was unsuccessful as left too long before action taken by hospital.
prolapsed discs and trapped nerves in spine has almost made me housebound. awaiting further mri results of spine. my legs have been suffering numbness and pain due to spine and are currently being investigated.
I have seizures being treated as epilepsy and a heart murmer was found during pre-op for arm.
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