I am sorry you've had to deal with this the better part of your life. Pheochromocytoma is very rare from what I understand. I read that for every 300 people who have symptoms and get tested, only one will actually have the tumor. Pseudo causes many of the same symptoms because the sympathetic nervous system goes haywire. My symptoms were extremely high blood pressure and heart rate, horrible anxiety, nausea, flushing, dizziness. I would bet you could find a group if you initiated asking on some different forums. Take care.