I've never met another adult who had similar symptoms though not until adulthood!

I have involuntary movements too my hands flex in an 'athetoid-type' style but I wasn't born with Athetoid CP and none of my neurological problems started until my early thirties.

I had difficulty walking my back and legs were really stiff at first we just thought cos it was winter (feb 2003) I could barely walk and struggled to keep my balance I was admitted to Neuro ward and given emergency MRI to look for MS.

I was told my symptoms were Ataxia but it was too early to say if it was 'cerebellar ataxia' but they said maybe and possibly due to Chronic Hypothyroidism (which I was born with). I had no involuntary movements at that time.

After 40 my arms started becoming twitchy and arms and legs would lock in position for a few seconds I had another scan they said no degeneration of cerebellum but something was going off in my Basal Ganglia and I had high electrical activity in my brain and was given the test where they stick the electrodes on you. I also had that as a child as I had childhood epilepsy which I was told can also be caused by an 'excess of electrical activity in the brain'.

I did wonder if there was a connection between them. I asked if maybe misdiagnosed with Dystonia and my neuro said they thought I had both together as I definitely had Ataxia first on its own for the first 6-7years.

As my cerebellum has shown no shrinking or degeneration they can't call it Cerebellar Ataxia with Dystonia so have classed it as Ataxic-Dystonic Quadriplegia (both present together in all 4 limbs) which I have never heard of.

I don't pick things up unintentionally but I drop or let go of things unintentionally which is why I can no longer walk with crutches as I can't keep hold of the handles.

My hands constantly flex at rest and arms and legs stiffen and relax periodically on their own, if I'm focused on something else like typing this or preparing dinner the stiffening stops whilst I focus on been as still as I can to chop veg or hit the right letter etc. My arms still move in a quite jerky motion though rather than one smooth motion.

sometimes i find myself sticking my tongue out or opening and closing jaw muscles and I hadn't consciously done it, doesn't bother me much at home as live on own and mainly housebound but I'm always really self conscious if have to be sat in waiting room or something where people tend to look if they see you twitch or move!

Kati