Susan, The best thing you can do is to start requesting copies of every test result. Learning about this disease is a monumental task. Having the copies of the results will help you over time to look back as you learn new things. Havng them to reference can be crucial in noticing things mutiple physicians might miss. It will also make it easier to learn the lingo.
Also over time recommendations for running certain tests change. It could be helpful just to know when was the last time a test was run, such as iron counts, liver function test, blood sugar counts, chromosonal studies, FISH test.
Set up a notebook or file and get all past results in it.