undiagnosed leg pain/can't regulate body temperature

My 19yr old daughter has seen every specialist under the sun, she also has kleppel feil syndrome, has had a neck fusion at 17yrs, vein balloon in her pelvis last year due to severe compression and last month exploratory for endometriosis which was confirmed and removed. the specialist has commented she has over sized veins in her pelvis also. the pain in her legs is constant and chronic she is struggling to want to live at this point. She has been on alot of medications including duloxetine, gabapentin, Parkinson's meds. palexia is a constant. in the last year she cannot control her body temperature so sweats and then very cold, her legs seem to be mottled at times and cold, yet blood flow is alright. We live in australia and feel like we are on a merrygo round and have exhausted all .... someone suggested the Minnesota clinic for advanced diagnostic treatment? I am willing to do anything at this point and would love some feedback.