Hi Bananamoore, I know what you mean about spending $$$s on alternative therapists and not being able to find anyone who knows about MDS. Sounds like you are doing everything that you can, and I hope your mother is OK.
I would second Marlene's advice to look for a functional medicine / orthomolecular doctor. Obviously some are better than others, and many won't have heard of MDS. They do look at the patterns/history of disease rather than the label though, so lack of specific knowledge of MDS may not always be a problem.
I understand what Baillie is saying about transplants, and it is a huge decision. Last year when my Hg dropped suddenly I was getting a lot of pressure to consider it. I refused as I have no sibling match, no caregiver, fibrotic marrow, and multiple antibodies (I suspect as I'm rejecting donor blood I'd also reject donor marrow). After my Hg stablised one doctor looked at my notes and said "Oh it's a good job we didn't do that transplant"