Connect
← Return to Dysautonomia is ruining my life, no help from doctors
Discussion
Dysautonomia is ruining my life, no help from doctors
Autoimmune Diseases | Last Active: 1 day ago | Replies (75)Comment receiving replies
@seniormed Thanks for your input. I got a diagnosis of autonomic dysfunction at Stanford, but no follow-up for explanation for 13 months. I gave up on waiting for Stanford. I tried University of Utah, which had about the same wait. This is not medicine imo. I conclude that my condition is not urgent. Once again I am alone making medical decisions, while doctors refer to other doctors who have no time.
The system is broken in many ways.
Replies to "@seniormed Thanks for your input. I got a diagnosis of autonomic dysfunction at Stanford, but no..."
Connect
@tatiana987 Sorry to hear you had to go through this. Interesting you mentioned Stanford... I had a similar experience a month ago with them. We tried to schedule a telehealth with their dysautonomia team, the triage nurse turned us away with the reason "it is not dysautonomia"... I mean... there's almost every symptom of dysautonomia, what do you mean its not dysautonomia? And why is a nurse doing the diagnosis?
We thought it might just be us, but looking at your experience, it might not be as isolated as we thought, unfortunately.