I have had BEB since about 1960. It was misdiagnosed at least twice -- as I recall, once by my GP and once by an Opthalmologist -- as psychosomatic, and I spent several years with analysts, making no progress. Finally, in 1990 a new analyst had the wisdom to look for new developments in the literature and identified my condition as BEB. Under his direction, I tried all the then-known drug treatments, all of which were either hopeless or caused unacceptabe side-effects. We then agreed that Botox -- just approved by the FDA -- was my best hope. It worked! :)
I am a regular contributor to the BEBRF Bulletin Board, and represent the organization for Riverside County, CA. Over time I have received Botox injections from eight different doctors from the East and West coasts. A substantial part of my motivation is to forestall the kinds of misdiagnoses I had in the past.