Wow, that is expensive. Jennifer Brock, on this site, just had one done on her Mom and I guess Medicare paid but I don't know how much. I'm not sure if she also had insurance and then medicare paid the difference, maybe she can help when she reads your post.
From what I've learned, a good neurologist that knows LBD can diagnose it without the PET scan. From what I know the PET scan will show exactly where the Lewy Bodies are but a good neurologist will be able to DX it.
I am not going to put my Mom through a PET scan for a DX no matter how how much or little it costs; but I am going to search out a doctor that will be able to give me a DX. My first appointment is in January. I go back and forth with thinking Mom has LBD. I'm not sure I was of any help to you.
I hear what you are saying about does it really matter. From what I know the most important thing is that with LBD certain medications are really dangerous for LBDers...so, I just decided to eliminate those meds and treat it as if it is LBD...I am confident to be able to get a DX without the scan. Personally, I don't want the dye going into my Mom or having her go through this test because I know it will upset her tremendously.
Maybe someone else has some comments that can help..