Hi jusf,

It sounds like periodic paralysis. Have you already seen Prof Mike Hanna at the National Hospital for Neurology and Neurosurgery in London? He is the best in the UK on this area.

Maybe
 

It sounds like Functional Neurological Disorder (FND). It also has several other names: NEAD, Conversion Disorder, Pyschogenic Non-epileptic Seizures (PNES), Psychogenic Movement Disorder, etc.
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I hope you find the answers that you need. If it is the above, it's a very long road!!