Hi, my name is Rosie and I'm 23.. I live in the UK and am a Psychology student. I have severe generalised dystonia and severe full body RSD/CRPS. I get dystonic storms and have been in status dystonicus several times.. anyone got any experience with this? I have taken baclofen (110mg), trihexyphenidryl (can't remember dose, sorry) and 120mg diazipam daily and I still get spasms, twisting and shaking... The UK appears to be really bad at treating movement disorders. Any advice?

Love

Rosie