Sharon,
No doubt you have come across the following websites, but if not I suggest you bring them up:
www.aamds.org - Aplastic Anemia & MDS Int'l Foundation
www.mds-foundation.org This foundation has several helpful booklets that describe MDS and a glossary of terms. If you contact them, they will send the various booklets. Also the foundation lists MDS Centers of Excellence around the USA and the world.
I contacted Azra Raza, MD (a MDS specialist) for alternative treatment. She was at the University of Massaschusetts Medical Center until last August. She now is at The St. Vincent Comprehensive Cancer Center in NY City. Her web site is:
www.mdstreatment.org
Best of luck to your mother!
larry gard (P.S. If you have not yet read the "Personal Stories" in the marrowforums website, you may find them of interest. Mine is there with a recap of my second and third opinions at the Cleveland Clinic and UMass Medical center. Other stories are most helpful in getting your "arms' around this interesting and mystyfying MDS disease.