Re: [Reports from NIH

[Guest guest]

The several times I was at the Clinical Center, I had to sign a release of

information form. I decided to only have all the reports sent to me, so I

could decide what I wanted to go into my medical folder at my pcp\'s office.

So I asked for copies of everything.

When I left, I got a verbal preliminary report and copies of all the tests

that had been run on a daily basis.

About 2 months later, I got a huge box in the mail. Not only did I get the

wrtten reports, but a copy of my chart. There must have been 150 pages.

Especially during the time I was a surgey inpatient, I was visited daily by

all the fellows and residents. Each one was required to write me up every

day. So there were pages and pages saying things like \ " pt, has rodefhg

movintg hwe4\ " The chicken scratching was unbelieveable and they just

xeroxed all the handwritten pages as well as the official reports.

BUt for anyone who is planning to go to NIH, make sure you sign a release of

information while you are there. Then you will get all the reports as soon

as they are ready.

Judy/Atlanta

The Ehlers Danlos National Foundation

http://www.ednf.org'>www.ednf.org

[Guest guest]

Judy: That is so amazing that they send every scrap of report.

Thanks for the advice...well noted.

Bernie

Re: [Reports from NIH

The several times I was at the Clinical Center, I had to sign a release

of

information form. I decided to only have all the reports sent to me, so

I

could decide what I wanted to go into my medical folder at my pcp\'s

office.

So I asked for copies of everything.

When I left, I got a verbal preliminary report and copies of all the

tests

that had been run on a daily basis.

About 2 months later, I got a huge box in the mail. Not only did I get

the

wrtten reports, but a copy of my chart. There must have been 150 pages.

Especially during the time I was a surgey inpatient, I was visited daily

by

all the fellows and residents. Each one was required to write me up

every

day. So there were pages and pages saying things like \ " pt, has rodefhg

movintg hwe4\ " The chicken scratching was unbelieveable and they just

xeroxed all the handwritten pages as well as the official reports.

BUt for anyone who is planning to go to NIH, make sure you sign a

release of

information while you are there. Then you will get all the reports as

soon

as they are ready.

Judy/Atlanta

The Ehlers Danlos National Foundation

http://www.ednf.org'>www.ednf.org

To learn more about EDS, visit our website: http://www.ehlersdanlos.ca

[Guest guest]

Judy: That is so amazing that they send every scrap of report.

Thanks for the advice...well noted.

Bernie

Re: [Reports from NIH

The several times I was at the Clinical Center, I had to sign a release

of

information form. I decided to only have all the reports sent to me, so

I

could decide what I wanted to go into my medical folder at my pcp\'s

office.

So I asked for copies of everything.

When I left, I got a verbal preliminary report and copies of all the

tests

that had been run on a daily basis.

About 2 months later, I got a huge box in the mail. Not only did I get

the

wrtten reports, but a copy of my chart. There must have been 150 pages.

Especially during the time I was a surgey inpatient, I was visited daily

by

all the fellows and residents. Each one was required to write me up

every

day. So there were pages and pages saying things like \ " pt, has rodefhg

movintg hwe4\ " The chicken scratching was unbelieveable and they just

xeroxed all the handwritten pages as well as the official reports.

BUt for anyone who is planning to go to NIH, make sure you sign a

release of

information while you are there. Then you will get all the reports as

soon

as they are ready.

Judy/Atlanta

The Ehlers Danlos National Foundation

http://www.ednf.org'>www.ednf.org

To learn more about EDS, visit our website: http://www.ehlersdanlos.ca