I am recently diagnosed. I have been strongly encouraged by many many personal and professional friends who I consider very intelligent and whose opinion I strongly respect (judges, lawyers, doctors) that Florida is not the pace to get treatment for complicated medical condition. They say I need to go somewhere like Hopkins or Mayo. I appreciate their concerns but after doing all the reading I can, I think it wouldn't matter mayo or Hopkins because seems like not too many options with treatment. Then I think, some have suggested Steve Jobs, who had access the best in the world, may have been around a little longer but for the fact that he chose not to immediately get that "best" because he thought he had read about and knew better.

Having said that, I am as happy as I think I can expect to be with my neuro although I think he is under treating me for reasons I am not sure other than that I think he wants to be cautious (one of problems with being lawyer is I think doctors are as a rule conservative with treating lawyers) but I do not think he really appreciates how 'disabling' my condition is and that I will be losing my law practice if things don't improve dramatically very soon. I am single, live alone (except for my 3 loving Italian greyhounds) and must have a way to support myself. So no, I dont think i am not going to be intubated anyday but every day I feel crummy a shell of my former self.

So I am curious what everyone else thinks about who, what, where the cream of the crop is and is it worth it to seek help there? I have heard Mayo, Hopkins but I know at least one person on forum has said they went and had horrible experience. I'd hate to use my savings for a useless experience. I went to University of Miami where they have MG clinic up that was Not good.

Given what I think is the widespread acceptance of what is limited treatment options, it seems better to continue to try to enhance the working relationship I have started with my current neuro and just keep pushing that he be more aggressive. Any words of advice, wisdom are greatly appreciated!!