I checked out the references you've cited and found very little later than '92-'93? It could be that testing has changed, [most likely] a great deal since then and the 'definition' or diagnosis could have a different name, more specific now. I'm finding that the definitions are changing by the month, myself.

Are you at a point where you could see a new neuro with a newer set/fresher set of eyes and brains on your case? The second opinion route mite be a good way to get a new set of tests, to compare with your initial tests...
If you can get copies of your prior tests, using www.Lizajane.org and the spreadsheets there could be useful to help you 'map' out what has been tested, changed, and is, essentially going on with YOU. I hope this helps...- j