|
Hi, I'm sorry you've had to join this forum.
There are a couple of positives in a bad situation. Firstly RARS is one of the better categories of MDS to have and generally doesn't require transplant unless it progresses. Secondly, RARS can be a pseudo MDS meaning it is sometimes found to be a reversible MDS caused by malabsorption and nutritional problems. If the pyridoxine didn't work, I would suggest you have a copper AND caeruloplasmin level done. I was originally diagnosed with RA which rapidly progressed to RARS and then RAEB 1... I had 6 months of chemo (Vidaza) before I was found to have copper deficiency. I now have copper infusions and my MDS, while still "officially" still present in my bone marrow is almost completely gone. I'm a little more unusual in that I pass copper out in my urine and most people don't, so that's why I need continuing copper treatment. Most people with copper deficiency return completely to normal as soon as the copper level is normalised and they take oral supplements.
As I said, this CAN be a cause but you have to go to a reputable clinic and get a good second opinion. The blood test results would be very good to have with you when you go to the Mayo.
Best of luck.
|