I have been referred to case western prion unit and cleveland clinic for suspected sporadic fatal insomnia but i dont have resources to go. i also cant get a doctor to order a pet brain scan that would show hypo metabolism of the thalamus. help?

Primary care doctor: One's primary care doctor can help. Referrals are stepwise, and with each step the funding is figured out. For example, one's primary doctor can refer to the nearest university medical center. The patient then interacts with the medical center social services staff to figure out funding. University medical centers all have ways to see patients with unusual conditions, but it is a stepwise process.