My husband was diagnosed with MDS in 2008, Type RARS with iron sideroblasts (I believe this system of diagnosing the type of MDS has been up-dated since then). However, my husband lived with this diagnosis until the age of 86, when he died in December 2018, from pneumonia following a fall. During that period he did gradually decline in health and also developed other health problems.
The hospital doctor’s expertise was to do with elderly patients with dementia. As he had hit his head when he fell, a brain scan was carried out, and the doctor showed me the result. His whole brain seemed to be peppered with black dots, not in one place but widely spread throughout. It was explained to me that this indicated brain damage and I was told this could/would have been due to his blood being abnormal due to the MDS. I had realised there was a problem, my husband couldn’t use the TV remote for instance, but he was coping, but the doctor was surprised that he could do so with the amount of damage indicated.
I have looked on-line to see if others have reported this or if any of the internet sites dealing with MDS have mentioned this, to no avail. I know information is valuable and I wanted to add this into general knowledge and see whether anyone else had heard of this. Also I would be pleased if this comment was seen by someone knowledgeable about the subject.
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