Steph06 Posted June 5, 2009 Report Share Posted June 5, 2009 I need some help. I am trying to get to the root of my problem and need to find a doctor who can help. I had a TTT done and it came back positive but no other test were done. Does anyone suggest vanderbilt and if so what doctor do you recommend? I have been having a really hard time and need some answers. I have a three year old son and my husband is a quadriplegic. My husband is very independent but with me being in a wheelchair pretty much myself doesn't help. I hope someone can help. I look foward to your replies. Thanks! Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted June 5, 2009 Report Share Posted June 5, 2009 If your current doctor hasnt suggested any treatment protocols or other ideas then seeing a specialist might be the avenue to pursue. Quote Link to comment Share on other sites More sharing options...
Steph06 Posted June 5, 2009 Author Report Share Posted June 5, 2009 If your current doctor hasnt suggested any treatment protocols or other ideas then seeing a specialist might be the avenue to pursue.My doctor is Dr. Goodkin is PA and is very good. He told me he is all of options because nothing seems to be working. I was on IV fluids didn't work. I am on a lot of meds and still not working as well as I hoped. He suggest that I see a specialist. (Dr. kauffman in NY or Grubb in OH) They have a 6-9 month waiting list. I found information on vanderbilt and I wanted to know if anyone recommends it. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted June 5, 2009 Report Share Posted June 5, 2009 Ok I get you. What treatment options have you tried? Quote Link to comment Share on other sites More sharing options...
vemee Posted June 5, 2009 Report Share Posted June 5, 2009 I agree with Ramakentesh if nothing is happening with your local doctors you need to go somewhere that specializes in pots. You can go two ways with Vanderbilt: the first is as a research patient which might get you in faster, the second is as an outpatient to the autonomic clinic. As an outpatient you will get your tests back quicker that as a research patient but I believe the wait for an appointment is several months, it has been over a year since I heard anyone say how long they had to wait for an appointment. As a research patient you could be involved in studies that last over 2 weeks. The doctors that conduct the research studies also run the autonomic outpatient clinic.You also might try the National Institute of Health which is conducting studies on rare diseases. Pots is on the list of what they are studying but it is hard to get accepted into the study.Cleveland Clinic is also a good place to go as well as the Mayo Clinic. Quote Link to comment Share on other sites More sharing options...
Steph06 Posted June 5, 2009 Author Report Share Posted June 5, 2009 Ok I get you. What treatment options have you tried?I have tried the IV fluid for a while but did not work. He put me on midodrin but did not work so now I'm on 60mg of Methylphenidate, 40mg of propranolol, 60mg of mestinon, 10mg of lexapro, and 0.1 of florinef. I am also using the support stockings. I went as far as seeing a doctor in Delaware who deals with Neuromusculoskeletal Medicine and Osteo Manipulative Medicine. Not sure if there is much more I can try but I am hoping their is!! Quote Link to comment Share on other sites More sharing options...
Steph06 Posted June 5, 2009 Author Report Share Posted June 5, 2009 Thank you for the information. Do you know if I would have to stop my meds if I wanted to look into the research studies?? Quote Link to comment Share on other sites More sharing options...
vemee Posted June 5, 2009 Report Share Posted June 5, 2009 If you go to Vanderbilt you will have to stop some meds, they can tell you which ones you will have to stop. Quote Link to comment Share on other sites More sharing options...
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