Jump to content

Is Vanderbilt A Good Idea?


Steph06
 Share

Recommended Posts

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!

Link to comment
Share on other sites

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.

Link to comment
Share on other sites

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.

Link to comment
Share on other sites

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!!

Link to comment
Share on other sites

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??

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...