Sleep Speciality

Hey guys so please remove if I need to revise this question, but today the second sleep specialist ive seen in 4 years. The first one diagnosed me with narcolepsy with cataplexy. This was done by Dr. Emde where I live. I sought out a second one because he refused to give me medication based on his belief that I could get better if I weened myself off of medical MMJ in my state. I followed his instructions and long story short it made the narcolepsy worse and the cataplexy was random. I could sit down and then not be able to move much cause most time not at all or even speak muscles just frozen. Well he dropped me as a patient due to believing I was seeking drugs and attention. At this point I hadn't been prescribed anything opioid or anything based. The two timez I have theres documented reactions one of no effect in the emergency room due to hip joint failure. The other was Valium for a neck injection still nothing. Anyway today's doctor told me im currently beyond medical intervention in his opinion due to my base condition Vascular Ehlers-Danlos, Its a rare subtype that you can look up. He told me if I had any hope that I would need to find a sleep specialist with a neurology specialty or something? Im on state insurance and waiting on a disability determination but does anyone have any advice on how I might find someone. Currently am planning on having to move to a different for better access to medical professionals that know the condition and can treat it. My primary whose recognized nationally and international in Europe said he will be reaching out to colleagues overseas for possible advice or guidance for me as well. Just thought id ask yall.