trappedat20 Posted April 1, 2014 Report Share Posted April 1, 2014 So, my general doctor told me he doesn't know what to do with me anymore. The neurologist is going to have the echocardiogram run and holter monitor but it seems like he doesn't even know what to do with me. Looks like my neurologist might check into a few things but he's trying really hard to get that referral to Vanderbilt because he really doesn't know either. My catscan and MRI of just my brain came back normal so because of this apparently the doctors here have no idea what else could be causing it. I see so many things on here about the causes though and am upset that they aren't doing more. Sorry this was more like a mini rant. I just feel like they keep referring me to different doctors but at the end of the day nobody knows what to do with me. My doctor doesn't want to give me anything because he doesn't want to mask any symptoms so they don't know what's going on. I live about 20 minutes away from Nashville so Vanderbilt was the obvious choice. From what I read on here it takes about a year to get in there. Is that correct? Is it worth it though? Are they actually going to search for what caused my dysautonomia or are they just going to run a few tests and tell me what I already know, that I have dysautonomia. I've looked through some of the posts on here about Vanderbilt but I'm confused on this. Do they actually look for what caused your dysautonomia? I don't want them to run a tilt table test and just be like yep you have dysautonomia but good luck from here on out. That's not worth waiting a year for. I want them to find out what caused my dysautonomia, if I have a subtype, and what I can do to feel better. I'm just so upset. I feel like I'm getting sicker and sicker and nobody knows how to help me. Quote Link to comment Share on other sites More sharing options...
gjensen Posted April 1, 2014 Report Share Posted April 1, 2014 MakeMeErised, first I hope that you feel better soon. I hope that this horrible flare subsides soon. You have to keep thinking that way and keep looking forward to the positives. You know how stress gets, and what it does to us, and how it makes things worse. I have never been to Vanderbilt, so I cannot comment on that. I would guess that you would get a pretty thorough work up, and get some answers, even if not the answer. I really do not have anything good to say, I just hate to see anyone feel this way. I am rooting for you. Quote Link to comment Share on other sites More sharing options...
trappedat20 Posted April 1, 2014 Author Report Share Posted April 1, 2014 @gjensen Thank you, that message was so sweet! I really hope I start to get better soon too. I hope everything works out for you also. My husband and I are actually going to a movie tonight because I've been so depressed and stressed out about being sick and stuck in the house all of the time that he's hoping it will cheer me up to get out of the house for 2-3 hours and do something fun. Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted April 2, 2014 Report Share Posted April 2, 2014 I just want to say I feel exactly as you do. You expressed my thoughts exactly. I am taking my daughter to a POTS specialist and am very afraid they will just say, "Yup, you have dysautonomia. Go home". I just keep hoping I am wrong. Will let you know after May 6th! Good luck!June Quote Link to comment Share on other sites More sharing options...
trappedat20 Posted April 2, 2014 Author Report Share Posted April 2, 2014 @June that's how I feel. I don't want to put all of my hopes into Vanderbilt just for them to tell me what I already know. I guess we'll just have to wait and see. Good luck with the specialist appointment. I hope you get some answers for your daughter. Quote Link to comment Share on other sites More sharing options...
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