rymac Posted January 15, 2009 Report Share Posted January 15, 2009 Since losing my insurance and having to join the Missouri health risk pool my insurance will not pay for anything out of state. I'm having trouble finding a Doctor in the state of Missouri familiar with autonomic disorders. I've been searching the web and even asked local Doctors. I'm not having any luck. Quote Link to comment Share on other sites More sharing options...
dsdmom Posted January 16, 2009 Report Share Posted January 16, 2009 I would suggest calling the neurology and cardiology departments of the larger hospitals in missouri and ask them if they treat autonomic disorders and do the testing for them as well - tilt table, etc. Quote Link to comment Share on other sites More sharing options...
momofsara Posted January 16, 2009 Report Share Posted January 16, 2009 Have you tried the University of Missouri at Columbia? Quote Link to comment Share on other sites More sharing options...
dsdmom Posted January 16, 2009 Report Share Posted January 16, 2009 I found this on another dysautonomia site:Dr. Woon Chee YeeWashington University School of MedicineDept. of Neurology660 S. Euclid AvenueSt. Louis, MO 63110 Quote Link to comment Share on other sites More sharing options...
Xanna Posted July 24, 2022 Report Share Posted July 24, 2022 I have seen 4 specialist that say I have Dysautonomia. I was recommended to go to Mayo or Cleveland. They don't take my insurance. I have been calling everyone I can find and the eariest appointments I can get are a year from now. I cannot find anyone that can actually answer any questions or give me advice on how to proceed. I have no idea what meds are safe. From what I have researched, I should never have surgery because my risk factor for survival is greatly reduced. That thought alone is terrifying. The only info I have is what I am researching from websites. I am frustrated, scared and have never felt such hopelessness in my life. I have no where to turn for help. They could atleast create an easy to understand website that a patient and their doctor can consult for real guidance. I know that I cannot be the only person to fend for themselves. I cannot express the anger, frustration, alienation and disappointment that I feel. Quote Link to comment Share on other sites More sharing options...
Pistol Posted July 24, 2022 Report Share Posted July 24, 2022 @Xanna - most autonomic specialists have a long waiting list, this is common. However - you can make an appointment with an experienced cardiologist to address any tachycardia issues you may have, or dizziness and brainfog. A cardiologist can order a Tilt Table Test that will confirm if you have POTS. This does not have to be done by an autonomic specialist. Depending on the results of the test the cardiologist can order medication that commonly is ordered as a starting point for POTS patients. However - treatment is a dance, one step forward and two steps back, because we are all so very different. In the way of self help it is recommended to drink ample fluid, load up on salt ( unless you have high BP ) and wear compression garments. If you look under our information tab you will find many helpful articles to explain what you can do to stay well. Avoiding prolonged standing is also helpful. Exercise is a MUST - even if you can only do a little at a atime. And no - I have never heard of surgery being of greater risk for survival for POTS patients. I have had many surgeries since onset of POTS and had no problems other than some problems with anesthesia after wards. POTS is not a life threatening disease, but it can affect the QUALITY of our lives if left untreated, Please keep that in mind when you get scared or overwhelmed. Hugs - and hang in there! Quote Link to comment Share on other sites More sharing options...
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