Doctors are in the process of ruling out pheo for me. I most likely don't have it (metanephrines/catecholamines/VMA in 24 urine collection, plasma free metanephrines all normal. MDs now following up with abdominal MRI ), but I've learned quite a bit about it since it was brought up as a possibility.
I'm very sorry for your loss, especially since what I've read suggests that it is very rarely fatal. Your mother must have been one of the unfortunate few in whom it metastisized.
If you'd like to speak to someone who has experienced it first hand, I'd recommend you go to www.pheochromocytoma.org where they have a link to a message board that is specifically all about pheo.
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