It is impressive to me how some people, like you and others on these threads, can stay the course until you get answers when something just doesn't fit the diagnoses or explanations given. The New York Times runs a Sunday article featuring a different patient each week who's dealing with a medical mystery. People from all over the world write in to suggest what it might be from their experience sharing similar symptoms but who were able to finally get accurate diagnosis and treatment. One person's medical mystery was solved by a med student in Italy, working lart-time for a doctor whose specialty included this rare illness.