Rachale,
I am really sorry to hear what you have been through so far. .The MDS/MPN diagnosis is a rare diagnosis, which was my initial diagnosis for about 1 1/2 years, before I visited three different doctors and two of the three agreed that it was MDS with Fibrosis, which kind of looks like and MDS/MPN, but is generally treated like MDS.
Whether or not your hematologist/oncologist is meeting your needs, it is not only common, but useful to seek out additional opinions, especially when the diagnosis is unclear, and the treatment path is not set out. Getting the additional opinions not only provides you with some clarity, but also confidence about what the next steps are.
there is an interactive map on the marrowforums website that has the MDS centers of excellence:
http://www.marrowforums.org/maps/treatment_centers.html
you can use this as a reference to begin your search for a specialist.