Vanderbilt Or Dysautonomia Specialist

[erikainorlando]

Hi.

I have a great EP who is willing to work with me and does reading on POTS, although he is not an "Dysautonimia Specialist". I am thinking of going to a Dysautonomia specialist but I will have to pay for it myself as he is "not in network" or I can try to get into Vanderbilt. My question is, is it worth it....can they reallly do more for me? Is there value in knowing the exact in's and out's of my dysautonomic dysfunction? My EP has tried some anitdepressents, florinef, midorine...and I am on toprol.

I had Guillain Barre in 2001....which is an autoimmune response that afffects the periphrial nervous system. I did hear once that Vanderbilt might be doing a study in some correlation, which obvioiusly would interest me. But if not...is there really value in spending all this $$? I would sell my right arm to feel better...but I'd like it to look like an optimistic venture at least..

Thanks,

Erika

[goldicedance]

Hi, Erika....go closer to home. Try the head of the EP lab at the Mayo Clinic in Jax. He is very knowledgeable and interested in POTS.

Still waiting for you to call. Will be back in Florida the first week in July.

Lois

[firewatcher]

For me, Vanderbilt simply confirmed my own suspicions of POTS, but did not attempt to identify or confirm any underlying disorder. There are different presentations of POTS and any knowledgeable doc who is willing to read the publications and your chart could put two and two together if they spent longer than the allotted 10 minutes to look at it. If you have a doc that will do that then you have a special angel! Vanderbilt did some very specific tests done in very specific ways (I've had other docs do them differently with different results.) There were several docs in FL (look on the physicians list on the front page of DINET) who seemed to be up to speed on POTS, I would start there; I did not have anyone in the Atlanta area who'd even heard of it. I am going back to Vanderbilt on Sunday for two days of testing, simply because there is no one here who can do them or would know what to look for, or even what they are looking at.

[ramakentesh]

Id suggest trying to find any doctor that is prepared to try a few treatments. Most docs ive been to are only supporters of one specific treatment option and one specific causal mechanism and if that doesnt work for you they arent interested in trying anything else.

I had Guillain Barre in 2001....which is an autoimmune response that afffects the periphrial nervous system. I did hear once that Vanderbilt might be doing a study in some correlation, which obvioiusly would interest me. But if not...is there really value in spending all this $$? I would sell my right arm to feel better...but I'd like it to look like an optimistic venture at least..

Yeah I think there was a similar study either from Vandy or Mayo on this topic. It showed that 6 POTS patients had similar antibodies to people with peripheral neuropathies of various types. patients all had stomach issues and pupil problems as well as POTS.

[erikainorlando]

Yeah I think there was a similar study either from Vandy or Mayo on this topic. It showed that 6 POTS patients had similar antibodies to people with peripheral neuropathies of various types. patients all had stomach issues and pupil problems as well as POTS.

Thank you!! I am gonna hunt for it. Really my POTS EP is great...although not all that familiar with Guillain Barre...my neurologist is great too (treats for residual Guillain Barre) but not familiar with POTS... but we will get there I am sure! I am gonna guess this would aide in my individual treatment plan...or at least am hopeful!