Dystonia

I'm 33 years old and I know now for 1 year i've got multifocal and paroxysmal generalized dystonia. It began after liquorleakage bedause of a misplaced epidural catheter for a X-band reconstruction in my knee. That's 3 years ago now. The symptoms started within a day or two with coordination problems with my left arm and teeth gringing. After a CT-myelogram it worsened abruptly tot the multifocal and paroxysmal form. Thereby I've got some dysarthria problems when in a paroxysmal episode.
Now after sinemet and a period of diarree (for 2 weeks after spending a holliday in Egypt) my symptoms worsened very fast within days to weeks in een generalized dystonia only when I'm walking or moving not when I'm sitting or lying. Cruches is a sensory geste, so it helps to walk nearly normal for 100 metres.
This progression has begun 2 months now and it's not diminishing. (My meds baclofen 90 mg/day and rivotril 2mg/day). Earlier this year a deletion was found on the DYT12 gene, but outside the "normal" mutation sides. After DNA testing of my parents the conclusion was "the problem found on the gene was probably not clinical relevant". But after the latest development I'm not sure this conclusion was correct.
I'll also ask this my own neurologist (movement disorder specialist).
But I'm curious what you can say about this.

Kind regards
Guppie