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Nervous-Vanderbilt Questions

April Love

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I am 30 years old. I was diagnosed with NCS in 2001, but my symptoms are very severe and don't quite fit the usual NCS description, and tend to look more like POTS, except the symptoms seem to be degenerative. My nuerologist has decided, we know it's dysautonomia, but beyond that, we need answers. After many years of medicine trials and tests, I am going to Vanderbilt in March. Although I am grateful for this opportunity, I am rather nervous (I guess a more honest word would be...scared). Does anyone have any idea what happens when you go to Vanderbilt? I am sure it's different for everybody, but if you could just give me some ideas of possible things to expect, I think I would be less afraid. I am currently on Midodrine and it helps me maintain my disabled, lay down all day, don't make any sudden movements lifestyle without causing me too much pain other than bad headaches. I am also on Atenolol. Will they take me off my medicines? I have had so many bad experiences with things like Florinef, I am scared to try anyting new. I just want to know what I have. Will the tests they perform to help me figure that out be painful like the tilt table test? If so that's okay, I simply would like to be prepared. (The tilt table caught me off guard.) I can't really find any information on what kind of tests they do for dysautonomia. Also, will they give me the results or will they send it to my doctor? If anyone out there has any information that could help, I would greatly appreciate it. Mentally, I have gotten slow and have alot of confusion, so I figure if I start preparing now, maybe I will have some idea of what's going on when I get up there.

Thanks for any advice,


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Sunfish and pooh bear gave very detailed accounts of their Vanderbilt experiences and will go along way to prepare you. The staff at Vanderbilt are excellent and they will not push you past your limits as long as you let them know what your limits are. I am there now sitting through my first medication test. These tests last for 4 hours and the majority of the time is spent sitting in a chair with several 10 minute standing sessions. The staff will tell you what you need to get off and how long you need to be off them before you arrive. I was told I could stay on midodrine until my arrival.

Again Sunfish's "Vanderbilt Chronicles" very detailed and will answer a lot of your questions.

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hi april -

i'm the one who's "vanderbilt chronicles" have been mentioned and thought i'd give you the direct link. you can find them at: http://dinet.ipbhost.com/index.php?showtop...bilt+chronicles

that said, you may still want to do a search for vanderbilt and read other discussions that have taken place on the forum. people have had mixed experiences at vanderbilt though i think i'm accurate in saying that those who have been there in the past 2 yrs of so (to my knowledge...obviously i haven't spoken with everyone!) have had generally good experiences, which leads me to think things have changed for the better.

my overall experience was a good one but by no means should you expect to find all the answers there b/c there is simply too much still unknown about dysautonomia...even at the places that know the most. after vanderbilt & being a patient of several other top autonomic docs in several locales my diagnosis still changes; no one disagrees that i have dysautonomia but what combination of NCS, POTS, PAF, Autonomic Neuropathy, etc. that it is is still up for debate. my symptoms have had ups & downs but overall have been degenerative also over the years and all my docs think there is an autoimmune component for me.

you said you don't know if you're going for research or not? are you going as an inpatient or outpatient? that should pretty much answer your question. my comments are all based on being a research patient though most of the docs are the same for both.

generally speaking vandy is NOT set up &/or able to do follow-up though so just realize that going in to minimize the disappointment.

that said, i'm still glad i went.

hope that helps a bit. feel free to ask if you have questions...either on the board or via PM/email. i have several emails that i have sent to others re: specifics of suggestions re: what to take, etc. if that would be helpful.

:) melissa

p.s. vemee - good to "see" you & that you made it there in one piece. i'm impressed with those of you who can post during the testing...there's no way i could have B)

p.p.s. april - re: medications, it varies re: whether you're going for research , what testing is planned, & what meds you're on. but DEFINITELY ask before going so that there are no surprises. i had to stop some meds several days in advance, others not until the day before.

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