NIH

[morgan617]

I called NIH a year ago in January and they said they had no studies for pots. I emailed them last night and told them that my doctor has been treated very rudely by all the doctors back east and all he is doing is trying to help me, and I am getting much worse. This morning I got an email with an 800 number and the lady said I had been given incorrect information when I called, they have a huge study going on. A whole year!!!! of being miserable and not knowing why my body does what it does or even validation that there are malfunctions. So a person is going to call in the next ten days to see if I qualify. They don't treat, but it would sure be interesting to see what the test results show that I can't get here. There are none of the types of tests most of you have had here, just those basic ones that always seem to be normal. So wish me luck. If nothing else, it may give my poor doctor some peace that he has done everything he can for me. He has tried so hard to help me and been treated so rudely by mayo and vanderbilt and cleaveland. They refuse to return his calls or talk to him. It's just a courtesy for one doctor to talk to another, so I can't believe it. He is a peer for goodness sake and very very smart. He is considered the premier doctor in the Pacific Northwest, so he's no idiot. And maybe if they could just learn something from me, it would put this a little more in perspective for me, like give it some purpose for me to be able to deal with it better. I'm too impatient to die and then find out why I had to be this miserable in life. So keep your fingers crossed, and prayers in your heart please, that maybe I will at some point get a few answers. Thanks, morgan

[Ernie]

Hi Morgan,

I wish you the best of "luck" to be chosen to go to NIH. Dr Goldstein and hs team are really special because they take good care of us.

I have been leaving messages to my neuro-muscular specialist for the past 4 months and he does not return my calls. He was suppose to run a full battery of test on me last October and the hospital does not call back. I called 3 times last week and the secretary does not want to give him the message anymore because she said that he already knows that I am calling and he knows what he is doing!

I understand how frustrating it is not to get the medical help we need.

I will be praying for you.

Ernie

[MightyMouse]

You can always check the NIH/NINDS website for active studies yourself via the web and write directly to the study's chairperson via the NIH listing. See my pinned "self service" section and scroll down to the 3rd heading "

Clincical Trials at NIH for Dysautonomia"

http://dinet.ipbhost.com/index.php?showtopic=1954

[Guest tearose]

Hey morgan, I enjoyed reading your post. Isn't is amazing that after a year all it took was one little email last night and poof...today you get many doors open to you. I always believe things happen at the right time...I have to believe that or I would just spend a lot of time being miserable! So, try if you can, to believe it was not meant to happen until now for you to go through this next door! I hope you can deal with the many pages of questions and the many days of testing! Prepare yourself with that feisty inner attitude that you have, and you will do very well!

I smiled when you said you were too impatient to die..to only find the answers later...you really have a super survivor attitude! I rejoice at this! You my dear, will survive this and will learn much and teach others much before your number is up! When you have experienced the misery as you have shared, you have earned the "right" to experience the opposite! Hang in there now to find those answers and experience the other side...happiness. I hope the NIH knows what they have in you!

with fingers crossed and prayers in heart, tearose