You must be sick to death of getting passed off like this! If you still have enough outrage left in you after all this time, I would consider a strongly-worded complaint letter to the practice supervisor / clinic / hospital (whoever is the appropriate person to report to here). It seems like it's just unprofessional and probably against some official guideline somewhere (that you could leverage to your advantage) to not do a minimum of checks and come up with some kind of treatment plan for a condition as complicated and as advanced as yours is.
And if you have a patient advocate service I would contact them as well if you haven't done. And I know that some people, if they go through all the proper channels like that and get no relief, can sometimes get results by going to the papers and making a public fuss. Or even just by suggesting that that will be your next step if you don't get some kind of an answer!