This discussion reminds me of a story about a Rabbi, who is called to decide between two neighbors. he hears the first one and then says- you are perfectly right. he then hears the other and says- you are perfectly right. his wife walks in and says- Rabbi, you cán't say that those two people are right, you have to decide who is right and who is not, that is why they came to you, because they want to know your oppinion. the Rabbi thinks for a moment and then says- you are right too.

the bottom line is that the name of an illness is not what matters. if a neurologist is reluctant to call it myasthenia-be it. If he is not eager to start immunosupressive treatment before being convinced that it is indeed indicated-that makes perfect sense. but, he is still obliged to take care of this patient in the best possible way.

my son had a seizure. he is a student in the university, and his life is pretty hechtic (like many young students). His EEG was borderline, so the neurologist told us that he is not going to call this epilepsy yet, and he is also not too eager to start medical treatment. yet, he made it very clear that he should not drive for a year, that he should make some changes in his life-style and that he should notify him, if he has another event like this, because if that happens, regardless of the EEG, which is not a "perfect" test, he is going to start him on anti-convulsive treatment. he also sent him for all the nesaccary imaging studies, and showed him a picture of all the famous people that had Epilepsy, and told him that he will be in "good company", with shakespeare, Napoleon, Dostoievsky etc, if he does end up having epilepsy.

this made perfect sense to me- not puting a lable of Epilepsy after one possibly provoked seizure. not starting treatment which could be for a very long perid, and carries some side-effects. and at the same time helping him deal with this illness in a positive, somewhat humoristic way, and understanding the impact of this on a 23 year old, who saw himslef as completely healthy until a day before. and giving very clear directions, as well as emotional support in a non-patronizing way.
and also understanding the limitations of a diagnostic test.

I am quite sure that Rachel would have been content with such an approach, and so would most of the patients who live in this "limbo land".

alice