Sheri,
My husband started out with MDS but he had a poor prognosis from day one. The bone marrow biopsy showed he had the "bad" kind of cytogenetics (I think that's what it's called) from day one. And after two years of various treatments for MDS, last August the doctor told us that he now had acute myelogenous leukemia (AML) and had "weeks not months." I will NEVER forget that day. So that was why I suggested above that you seek other doctors and opinions if you weren't happy or comfortable with the current doctors.
And while I will be the first to admit that my husband does not have the quality of life he would like to have, we have had some wonderful times together during the past six months. And I will never quit hoping for a miracle. I thank God for each and every day.
There are so many stories on this forum of faith and hope, and there are some heartbreaking ones too. We (this forum family) have lost two members recently and it always hurts and hits close to home. But so many on here have supported me during the rough times of my husband's illness.
My husband was only given a 2-3% chance that this last chemo would work, but he opted to go for it. We figure 2 or 3% is better than 0%.
No one can tell you how long. Only God knows that. And even though the doctors try to give their opinion based on statistics and textbooks of how long a person has, this is a disease of one, as someone said, as every patient is different.
I am posting a link one of our relatives sent of 20/20 (Robin Roberts journey). And even though, like my husband (75 years old), your Mother is not a candidate for transplant, it shows Robin's experience with MDS. It takes a few seconds for it to go from one segment to the next, so don't click off thinking it's over. It goes through her whole ordeal and was very inspiring.
http://abcnews.go.com/2020
I hope you will take the time to go through other people's previous posts as so many people have explained things far better than I can.
You asked about my husband's symptoms. Mostly just tired - very, very tired. His RBC's are never over 9.5 (with transfusion), he has petichiae (little red spots) all over his legs from lack of platelets as well as bruising all up and down his arms. He is often light-headed and sometimes confused if his blood counts get too low. He is transfused about once a month and we get his labs checked weekly.
We spend a lot of time at doctors and hospital getting blood and we have a "new norm" but, hey, it's better than the alternative.
God bless you and your Mom and family. We are praying for all of you.