Anoj Posted June 5, 2014 Report Share Posted June 5, 2014 The title says it all. I'm tired of the roller coaster, symptoms, drugs, crappy doctors. I think it's time to go.Anything I need to know about this place? Are there any docs to avoid? Which one is the best?I'm hearing stuff about insurance companies denying some of the tests.What should I expect?I've already had a blood tilt with elevated catecholamines, 48-hour heart monitor, some type of psudo scan that measured neuropathy (doc said I have it and tried to blame it on obseity/deconditioning) not a true POTS diagnosis (hr went up 20 bpm, not 30), tried SSRI, fludrocortisone, midodrine, beta blocker, exercise, etc., etc. My doc said if i lost weight it would help. I went on a diet recently and had a total relapse, was house-bound for a month. Just a few days ago had an episode in a theater, had to be sat in the VIP area on a couch and wait it out, missed the entire event. Etc., etc., really limiting my activities for years.I really want to find the cause of the condition and not just treat the symptoms. Can I expect the dr.s there to try to find out the cause?The lady on the phone said it might take a year to get an appointment.Thanks. Quote Link to comment Share on other sites More sharing options...
looneymom Posted June 6, 2014 Report Share Posted June 6, 2014 With all the research going on there, it will probably be worth the wait. See if you can get on the list to be called if an earlier appointment comes open. I've heard good things about the adult program. Quote Link to comment Share on other sites More sharing options...
DeGenesis Posted June 6, 2014 Report Share Posted June 6, 2014 You have already been diagnosed with an autoimmune disorder (Hashimoto's), and you have a history of inflammatory conditions. You may very well be right that there is something else going on. Quote Link to comment Share on other sites More sharing options...
Anoj Posted June 6, 2014 Author Report Share Posted June 6, 2014 yeah, that's why it's important for me to find the cause. so my question is, does vandy care about mast cell, NET defficiency, or any of the other conditions that cause POTS? i just want to make sure i'm not wasting my time or money. even if they could point me in the right direction, that would be great. Quote Link to comment Share on other sites More sharing options...
looneymom Posted June 6, 2014 Report Share Posted June 6, 2014 I thought I had read an article on the forum about NET research that had been done at Vandy. Hopefully some more people will post because I have read past posts of people that have went there. Do a forum search and type in Vanderbilit. You should be able to find some of their old post. Quote Link to comment Share on other sites More sharing options...
badhbt Posted June 6, 2014 Report Share Posted June 6, 2014 There is a great free thyroid summit going on. http://thethyroidsummit.com/tom-obryan-dc-ccn-dacbn/ I think DeGenesis is right about inflammatory conditions. Trying to figure out what is causing the inflammation is a start. I truly believe in looking at the diet. Quote Link to comment Share on other sites More sharing options...
Anoj Posted June 6, 2014 Author Report Share Posted June 6, 2014 oh, i've been doing that. thanks.the research is different than the outpatient clinic. right now i'm just trying to get into the outpatient clinic becs i think i'd have a better chance at being seen. don't you have to meet certain requirements to get onto a research study? Quote Link to comment Share on other sites More sharing options...
Anoj Posted June 6, 2014 Author Report Share Posted June 6, 2014 There is a great free thyroid summit going on. http://thethyroidsummit.com/tom-obryan-dc-ccn-dacbn/ I think DeGenesis is right about inflammatory conditions. Trying to figure out what is causing the inflammation is a start. I truly believe in looking at the diet.does inflammation cause POTS? Quote Link to comment Share on other sites More sharing options...
DeGenesis Posted June 6, 2014 Report Share Posted June 6, 2014 There is a great free thyroid summit going on. http://thethyroidsummit.com/tom-obryan-dc-ccn-dacbn/ I think DeGenesis is right about inflammatory conditions. Trying to figure out what is causing the inflammation is a start. I truly believe in looking at the diet.does inflammation cause POTS?Inflammation is the result of immune system activation. Inflammation is generally not the cause of disease, but the result of whatever is causing the inflammation, as badhbt points out. Gut problems and autoimmunity are possible causes of chronic systemic inflammation. They might be interrelated.The answer to your question is therefore both yes and no. Quote Link to comment Share on other sites More sharing options...
DeGenesis Posted June 6, 2014 Report Share Posted June 6, 2014 There is one hypothesis in CFS/ME research that even after the cause of the initial inflammatory response is eliminated, such as a viral infection, a vicious cycle begins in which inflammation begets more inflammation. Quote Link to comment Share on other sites More sharing options...
badhbt Posted June 6, 2014 Report Share Posted June 6, 2014 Autoimmune Diseases are a cause of POTS. Inflammation and autoimmune go hand in hand. Quote Link to comment Share on other sites More sharing options...
Anoj Posted June 6, 2014 Author Report Share Posted June 6, 2014 well, i wouldn't doubt that this has an autoimmune component, and i've certainly considered it. the quesion is, would vanderbilt consider it? is this something they would explore and help me to explore?i was told that i have small fiber neuropathy, with some test that apparently no one has ever heard of (psudo scan), so i don't know the legitimacy of this. but my doc said it was because of obesity (which started AFTER my illness, caused by an SSRI). and then he tested me for diabetes, which i do not have. so, i don't think the neuropathy i have is the typical neuropathy that he is thinking. it did occur to me that my neuropathy might be autoimmune, since i have had other autoimmune problems.the treatment for that apparently is IVIG. i have no idea where to get this or how to go about further diagnostics for this. Quote Link to comment Share on other sites More sharing options...
Anoj Posted June 6, 2014 Author Report Share Posted June 6, 2014 i've also suspeted a NET problem, since i definitely had elevated catecholamines on a blood tilt. again, would vanderbilt be the place to figure this out ... Quote Link to comment Share on other sites More sharing options...
Anoj Posted June 6, 2014 Author Report Share Posted June 6, 2014 i'm specifically interested in vanderbilt becs it's the closest to me, and by closest, i mean a 9-hour drive. i'm way too afraid to fly. i think i would freak completely out in an airplane, since i can't handle lots of stimulation, movement, elevation, etc. Quote Link to comment Share on other sites More sharing options...
Anoj Posted June 6, 2014 Author Report Share Posted June 6, 2014 thank you for all of your responses, btw Quote Link to comment Share on other sites More sharing options...
badhbt Posted June 6, 2014 Report Share Posted June 6, 2014 Anoj I would think that Vanderbilt would look at you at all angles. I would make the appointment knowing you can always cancel. I wish I would have made an appointment early on in my illness. Quote Link to comment Share on other sites More sharing options...
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