Dysautonomia / NCS / Search for a Specialist

[denisef_0324]

I have been diagnosed with Neurocardiogenic Syncope for about 7 years, but I always knew there was something wrong with me. As a teenager I would faint about 2-3 times a week, I was always fatigued and when i would describe what I felt I was dismissed as being fine with no real concern. One doctor told my mom I could be looking for attention and to seek a psychiatrist or counseling-even went in detail to find out my families "situation". I had every test done to me BUT the tilt table test. I finally found a DR who said he had a patient with a condition that sounded very similar to mine and referred me to an electrophysiologist who then did the tilt table test. When it came out positive I was glad to know that I was right- something was wrong and confused cause I was just told to increase my salt intake. I later started beta-blockers, then fludocortisone. Then I switched form one beta blocker to another, salt tablets and the right combo was never found for me. I later started Midodrine, and when this didn't help, they prescribed Paxil along with it. My question is: I need a SPECIALIST in Dysautonomia. I can't find any dr's in my area and even called my health insurance and asked for a autonomic disorder specialist or dysautonomia specialist and was told either Mayo Clinic, or Vanderbilt University. I'm 6 months pregnant, making my symptoms seriously flare up, I can't take my RX and I'm left with  "suck it up"-this is literally what my high risk OBGYN said from Tampa General-University of South Florida. Does anyone know a doctor that might be in Florida that will know how to handle my case?

[Heiferly]

Hrm, realized I needed to amend this ... when I say "the only dysautonomia specialists in the entire south" above, I mean the only ones with diagnostic testing clinics. From your post it seems like that's what you need at this point is a clinic-based expert in dysautonomia. I don't want anyone jumping down my throat that I made a sweeping generalization that their doctor wasn't a real specialist!!  =:o

[Heiferly]

The only dysautonomia specialists in the entire south are either at Cleveland Clinic's FL branch (and they do NOT  have a full autonomic clinic like the Cleveland Clinic in Ohio) and Vanderbilt in TN (which does have a full autonomic clinic). Considering traveling will be tricky during a high risk pregnancy, I recommend you contact CC FL and request an urgent appointment with the dysautonomia team there.

http://my.clevelandclinic.org/disorders/dysautonomia/hic_dysautonomia.aspx

Toll-Free: 866.320.4573  for Appointments

Make sure you tell them you need an appointment in FLORIDA not Ohio, and that you need to see a dysautonomia specialist. Also mention you are pregnant and need guidance with your pregnancy, that will get you in fast!