I am reminded from a couple of other member's situations that we all need to be our own advocate when dealing with medical personnel. No matter how they try to rush us through our appointment, we must make an effort to NEVER let a doctor leave without explaining any new terminology used regarding our diagnosis. Since there are so many variables with our syndrome and so much that is not understood by all medics, chances are we'll never get a second chance to get the correct explanation. For instance, a neurologist may use terms that no one else understands. Not receiving a clear understanding of what was said leaves us emotionally drained and with our minds conjuring up something as bad or worse than knowing exactly what we are dealing with. Dealing with CES daily is enough in itself without being left hanging about what new definitions mean; if a doctor is going to use new terminology when discussing our case, then it is only fair that he take the time to explain exactly what those words mean in laymen's language... only fair, right?
Hope this reminder keeps others from suffering needless stress from not being given full explanations of terminology used during their appointments. I don't know about you, but my imagination can run AMOK and waste more good worry time than actually dealing with the facts!