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Vanderbilt


morgan617
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wow, just got a pretty little form letter from vanderbilt saying sorry, but they can't see me. no reason why, no anything. i am pretty devastated as this reinforces that feeling that i'm nothing but a nut case. how humiliating. it wouldn't be so bad if they gave a reason, but to not say why leaves so much to the imagination. i don't know what i'm going to tell my doctor, as he had pinned everything on someone trying to help him help me. wow, i guess i'm in shock. i did email them and tell them that letting people like me know in this this cold impersonal manner, certainly doesn't help us. but i guess that's all i can do. my husband is devastated. i only wanted to go to be validated. but he was also pinning everything on some sort of treatment plan for me. does anyone else here ever wonder what exactly it is that God has in store for us..... morgan

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i had applied for research programs. it costs so much to go, i was afraid to just make an appt. and not get anything accomplished in a day or so. but gosh, it is so discouraging and my husband was crying when he came home for lunch. he is just sick about it and now feels he's just going to watch me die. i don't know how to make him feel better, except to tell him he has done everything for me possible and has always been so supportive. but he told me he was a failure. man, this just *****. morgan

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Hi Morgan,

I am so sorry you were not accepted at Vanderbilt. I understand exactly what you are going through, believe me.

If you would like I could email you personally about it. My email is: homeopathiehn@hotmail.com

Ernie

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Dear Morgan,

I know just how you feel. I've been told by some Docs to "learn to live with it" or "you need to see a specialist(ie. a shrink)" that I just about gave up. I'm glad I didn't. I have found a smart and somewhat knowledgeable Doc. It took a lot of work. You never when or where you might find that just right Doc.

Good Luck, Blackwolf

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Morgan, I'm sooo sorry to hear about your rejection letter. :(

Don't give up. I know that you can't give up! :o My husband went for years without diagnosis or help. We are just now finally with doctors that are trying to help us. So, please don't allow this to keep you from going forward! :mellow:

No one deserves to take your hope away ever!!

I am currently filling out the forms to see if Vanderbilt will see my husband.

I'm curious about two things.

One, do you have a diagnosis of dysautonomia - POTS or the like?

Second, did your doctor send any kind of letter along recommending that you be seen?

At least this lets me know what I might be in for. :wacko:

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Morgan,

That really *****. I hope your doc is able to at least just go with trial and error in terms of trying new meds and treatments on you. Or maybe he can call down there himself and see if there's anyone who can help him. Doctors tend to be pretty good about helping each other that way. Maybe he should see if any of his fellow med school graduates are now working in the area of dysautonomia.

I know it feels like there's little hope, but you have to try to find some happiness in your life -- whether things are crap right now or not. Even if it's for five minutes a day. Go do something that makes you happy. Eat a sundae. Go shopping. Pick daisies. Whatever you like doing.

We are all here for you.

Amy

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dear wife of pots. yes i did have a diagnoses of oi and pots and my doctor sent my records twice as they lost the first set. he also sent a letter explaining why he wanted them to see me. he has exhausted every thing he can think of to help me. doctors, tests, ablation, the works. he told them there is no one in this area that is capable of doing anymore due to lack of knowledge. it obviously wasn't enough. i think he may be calling them when he gets back from vacation. he is going to be livid. he is a wonderful doctor and i feel so lucky to have him, but as he said, there's nothing more we can do without more specific testing, which is not available here. thanks everyone for your support. i haven't been here much lately as my euesight is getting very poor and the print is so tiny i can't read very well. but you are all great. thanks again. morgan :mellow:

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I am so sorry to hear this!! I would be livid too if I were you....extremely livid :mellow: You have the right to get the treatment you deserve, and if they won't even consider you then where are you supposed to go? What do they expect you to do? It's so unfair...but keep plugging along and don't give up!! I know its easier said than done, but it's the only way sometimes. I'm so glad for you that you have a supportive husband who can see you through.

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Hi Morgan,

I though about you some more tonight. I don't know if you have private insurance but if you do I would try to get in Vanderbilt that way. They are less restricting than when you want to be a research participant.

Ernie

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Hi Morgan,

I'm sorry to hear you didn't get into Vanderbilt. I second what Ernie said....perhaps you could try to get in as a regular patient instead of in one of the research protocols? The research protocols often have specific guidelines for the patients they choose. If you don't fall into those guidelines you don't get in. That doesn't mean you still can't see one of the doctors (or a specialist elsewhere). Hang in there, I know this all can get soooo frustrating and downright disappointing. We're here for you.

Michelle

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thanks so much everyone. i am waiting for my primary to get back from vacation and then will discuss just getting into someone privately. we live in washington state, so it could be a very long and expensive trip for a few hours. so it would really have to be worth it. disability helps, buts it's less than a third of what i was making and my husband works 70 hours a week just so we can get by. i really hate to think of spending thousands, unless it's really worth it. will see what my primary says. will consider dr. grubb as he seems to be very popular. but i have an appt. with my doctor coming up and will see what he thinks. this is really frustrating to me only because it has upset my family so much. i'm getting used to feeling crummy all the time, so i guess it's not the huge deal to me that is to them. i don't have syncope, at least yet, but my heart rate has been falling down to 60. i can't remember the last time it was below 90. so syncope may be on the way. i felt pretty awful when i got up and around. my poor sinus node is starting to wear out i think. i imagine it is as tired as i am. lol. well again thanks. this is a wonderful site. morgan

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I got my rejection letter from Vanderbilt last weekend too. I cried for hours - because you do put a lot of hope into these things. I have private insurance (very good insurance thank god) and they were aware that i was unable to tolerate any meds therefore would be more of a clinic patient than a research patient - they reviewed my records and still stated that they did not think that there was anything that they could do to help me. I am beginning to wonder if anyone can!! Hang in there... the answers are out there somewhere!

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I to have been turned down by Vanderbilt. Please don't think that it is you or that you don't have a problem. The real reason is they only have a certain amount of grants. You have to meet all the protocall or they cant let you in the program.

One other place tp try is National intitute ot health or NIH of BETHSDA MARYLAND.

I hope this information helps. The main thing to remember is that your are not alone. There are people out there who believe you and know what you are going through.

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Don't feel bad, really. I was turned down by Vanderbilt last year too. I think they are looking for a very specific criteria.

I was accepted into 2 of the NIH study's. One was a study on medication and I turned them down because I already know that I don't do well on that med. The other one is unfortunately on hold until next year.

Don't give up! Just apply for other studies.

steph

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