who all has been to ucsf to see nussbaum? i had a VERY in depth conversation with his nurse and the clinic today that i wanted to pass along. first, nussbaum primarily only diagnoses whether you have EDS or not. he doesnt treat it...or will even study you. because stanford started sending their patients to him..and everybody else found out about him..their offices got so overbooked they had to send letters out to pcps to tell them they had no appts left for the year...which was back in sept. She said that what we learn on own our being our own advocates is pretty much what you would hear during an appt with him..maybe even less so. He will tell you to hook up with a good cardio/pt and such. For those on waiting lists they dont want you to be disappointed after waiting or driving a long time to find out he doesnt do what you thought he did. For those who have seen him does this differ with what he did during your appt? She said he can be rather crass and she was trying to tell me in a much more sensitive way lol. Kinda glad now i didnt get my hopes up...but sad that there is now nobody that is researching us here.
Posted on: Tue, 16 Dec 2014 18:39:58 +0000