Please get copies of all your test results and keep records of them in spreadsheet form, if you're up to it.

It's key to keeping things on track, and making sure everyone knows what everyon else is doing.

As you know, I've put up a website just for us pn-ers to have a listing of all the tests which might be positive and give a cause for our problems.

The charts are at www.lizajane.org.

Here's mine, which is uploaded to the site:

http://www.lizajane.org/PN/Users/liz...e%209,2007.xls

It represents years of tracking down lab results, but it was the only thing that made this week's visit to a new rheumie useful. Even with a letter of refeerral, there'd have been no way he could see what was done by other doctors at other times. He only drew blood for the couple of tests which needed repeating, seeing what had already been tested.

Please please call every docto who's done any tests and ask that all results be faxed to you or mailed to you. You can write in the results by hand, rather than typing them, if that's easier.
But make a looseleaf, and invest in a three-hole puncher and just keep them all together, at the very least.

Good luck with the work up. And, while I know you feel offended that your daughter's case was published without your permission, my own take on it is alittle different. I see her identity is never given away, and it is published because somebody might learn from it. Her doctors are showing a lot of respect for what happened to her, and don't want anyone else to go through it, so they've gone way out of their way to publish a case where all their efforts FAILED. This is admirable, and way too uncommon. Think about it some more, and maybe you'll end up feeling the way I do, that this is the ultimate respect for her and for you. This a grieving mother doesn't need to deal with, in addition to everything else. They are thinking about your daughter, even in her death. That's remarkable. No consolation, of course, but truly, it's respect.