Rapid Onset Dytonia Parkinsonism

A family member was dx'd with what the movement specialist either thinks is Rapid Onset Dystonia Parkinsonism or a movement disorder related to antiphospolipid antibody syndrome, 3 years ago. about 4 years ago at the age of 26 he was fine one day and shaking the next from head to toe. Of course the first response from local doctors was this was a drug toxicity, or overdose, but everything came back clean. He deteriorated over the first 8 months but has stabilzed. He can walk about 50 feet with a walker and uses a wheelchair for anything farther. He can not hold himself up without arm support. At the worst before he started artane and sinemet he was having trouble speaking and swallowing as well. He applied and was approved or SSD on the first try.

He is still having trouble getting treatment, no one will really put a concrete name to whats going on, or suggest treatment other than the two meds, which do help greatly. He was seen by the drs at the NIH government facility and they say its all conversion disorder but his MDS still disagrees. He has been to several big hospitals in NYC and Philadelphia but everyone is stumped. His MDS has mentioned a dr in Toronto or Great Britian but traveling out of the country isnt financially feasible.

One dr did mention a chemo therapy type infusion but I cant remember if that was for the APS or the shaking. Any suggestions on which way to head would be great!