I would also like to welcome you to Mayo Clinic Connect. Most of the members of Connect understand the difficulty of having a rare disorder that is difficult to diagnose and/or difficult to treat.
I would also recommend, like @lioness, that you seek a second opinion. I would also recommend that you get your second opinion from a research/teaching medical facility. I'm thinking of a university medical school and/or a Mayo Clinic facility (there are three Mayo Clinic facilities in the U.S.). If you would like to schedule an appointment at a Mayo facility here is the link for appointments, http://mayocl.in/1mtmR63.
I applaud you for going through the counseling process. It is helpful when you are dealing with frustration in seeking a treatment plan and/or a diagnosis. Could you share what the most difficult symptom you are experiencing right now?