Ya, you feel that way because you are being tossed around in circles. Ugh. Actually it sounds like you're just being tossed out the door Buh Bye!!!!

I don't understand why docs don't have any sense of obligation to see the patient through until they're care for. But they don't, one of the hard lessons I've learned in the past 10 years.

Why did they test you on the CPAP and then not give you one? Did i miss something? Can you go back and get one? Go get one!!!! You need it!! Just be patient and take it in baby steps - it'll take 8 weeks to get used it on average.

Have you looked into Congenital Myasthenic Syndromes? Didn't you say that you had symptoms at the age of 10? There are several different types and do not result in a positive antibody test. And then, for instance, in familial limb girld myasthenia the nerve conduction studies and needle emg's were normal at rest but after having the patient run up the stairs three times then showed significant decrement in some muscles. I have a great book which describes the different types of congenital myasthic syndromes. Pretty fascinating. Somebody else who knows a lot more about all this will come along and explain better, but I just wanted to mention it to you.

By the way, the fact that your sleep doctor doesn't want to see you again seems like a mere trifle to be blown away in the wind. In other words, who cares? Call him back and let him know you need to be seen again. And push for a bipap this time.

Also, if I were you I'd take redtail's advice and get hold of the mg associations in Australia. Somebody will eventually help you to the right neuro.



Ally