Jump to content

Going to Vanderbilt


cattale
 Share

Recommended Posts

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. :)

Link to comment
Share on other sites

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

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...