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Going to Vanderbilt


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I'm leaving home for Vanderbilt Autonomic clinic for my appt on Tuesday. I was initially diagnosed with Ehlers-Danlos III & POTS, but now it's looking like the POTS is only part of it. I'm in Pure Autonomic failure and going to see if they can help. Does anyone here know of anyone close to you who's had or has PAF? If so I would like to chat with you at your convienence. When I get on Wed., i'll let you know how it went. Thanks. :)

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hi cat -

i just wanted to wish you well with your appt.

when a number of my body systems started to follow suit (or rather not follow suit) several of my docs were thinking along the PAF route...including my doc at hopkins. when i went to vanderbilt it was discussed but my test results don't quite fit the bill. so instead i have the grab bag of Autonomic Neuropathy, POTS/OI, NCS "plus" as i have many of the aspects of PAF re: GI, bladder dysfunction, etc....my HR/BP are just a bit of a different profile that don't quite fit in any of the boxes. i was told at vandy that they'd be curious to see where i am in the future....uh, yeah...me too:-) definitely no magic fixes, but my vanderbilt trip was helpful.

i hope you have a helpful visit!

:) melissa

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