I'm so sorry you have to go through this, Ruth. I know how hard it sucks. Like everyone else, I'm hoping it was just a bad sample. Do you know if they spun the sample down to look for a few?
In case you haven't delved into the blog world, you can find a handful of blogs of people in similar situations here:http://www.stirrup-queens.com/a-whole-lot-of-blogging-brought-to-you-sorted-and-filed/diagnostics-room/
Let me know if you have any questions. We've had the diagnosis for 9 months already, and have done a ton of research.