Karen,
Even in difficult times you seem to strive to find some positive and I admire you for that, very much. I think it is great that you got to enjoy a face to face meeting and from what I have read you couldn't have found a better one then Helen.
I agree, we can't give up - persistence usually pays off in anything. You know the saying that goes something like this: "if you want something bad enough you have to work for it" - I think EVERYONE that has been dealing with this can relate. We shouldn't have to beg for proper medical attention but sometimes I know if feels that way. I am hoping if just one out of five doctors "see the light" and start treating us and the disease properly in the long run we may all have a shot at a normal life again.