> UCLA wants $150.00 to send it out. My Neuro's office won't pay it,
> and say they can't bill my insurance (Medicare/Medicaide).

I'm not sure whether the $150 is for shipping the biopsy, or the cost
of testing once it gets to Children's. When I had my biopsy shipped
for testing, the people shipping it didn't charge me anything, but I
did have to pay to have the testing done, since it didn't fall under
the guise of any of the current research project funding.

The problem is that all the protein antibody tests are considered
research, and in fact if you read the manufacturer's data sheet for
the most commonly used antibody for testing dysferlin, it specifically
says it's not to be used for diagnostic purposes. Of course, there
currently isn't any other way to diagnose dysferlin deficiency...but
until something is officially approved as a diagnostic test, insurance
won't cover it.

I'm not sure I can offer much help, but in the long run having the
antibody tests approved for diagnostic use would make things a lot
easier.

Brad