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Old 09-02-2011, 02:03 PM   #1
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Exclamation Autonomic Dysfunction- Vanderbilt Autonomic Research Center- Any one with experience?

Hey everyone. I'm a 15 year old female and i had sinus surgery in November, then I've been sick all of 2011. In May i had an appendectomy which detected endometriosis also. Since the beginning of 2011 i've had alot of symptoms get worse. I've been dx with autonomic dysfunction/orthostatic intolerance but no specific diagnosis, and no plan for treatment. im seeing a pediatric cardiologist who is no help.
My doctor is trying to get a referal through to Vanderbilt Autonomic Dysfuntion center, to get me admitted to the Clinical Research Unit. Does anyone have any experience with this? I have alot of questions lol...how long does it take a referal to get through to them/hear back, its been almost 3 weeks, im sure it takes a while tho. Any experience stories? Thanks!

 
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Old 09-04-2011, 06:24 PM   #2
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Re: Autonomic Dysfunction- Vanderbilt Autonomic Research Center- Any one with experie

Hi GallopingCloud, If you will go to dinet.org or dysautonomia information network you will find a lot of info on your problem. A lot of people on that website have been to Vanderbilt. Good luck to you.

 
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Old 09-08-2011, 11:12 PM   #3
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Re: Autonomic Dysfunction- Vanderbilt Autonomic Research Center- Any one with experie

Lol. I actually discovered the vandi research programs through dinet. I was hoping to find people on here with experience there.

 
Old 10-03-2011, 10:38 PM   #4
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Re: Autonomic Dysfunction- Vanderbilt Autonomic Research Center- Any one with experie

yes I am 22 with POTS and OI. I have had it for around 4 years. After my daughter was born I got significantly worse. I am now bed bound but hoping with some new meds that I will start feeling better. This is not a fun illness, but some people do get better!

 
Old 10-03-2011, 10:39 PM   #5
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Re: Autonomic Dysfunction- Vanderbilt Autonomic Research Center- Any one with experie

Have you tried midodrine or florinef? With orthostatic intolerance, a beta blocker would not be wise until you get the blood pressure up. Have you done the TTT? If so what were you stats?

 
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