Rhodys, when my husband was at his worst and was using a walker (which he had never used) the two had us be the go between and insisted we get a quicker appt with the neurologist. We were able to get in with the movement specialist very quickly and she was very concerned and at his confusion as well. That is when she said Parkinson’s doesn’t know how to act when some other medical issues. They are at two different medical systems but are able through the cloud see the notes. At that time they changed his Parkinson’s meds. We didn’t have a wait and see on the MDS his counts were so low and on his bone marrow biopsy he had 19% blasts and 20% is leukemia. So started chemo in two days. Have you had a bone marrow biopsy and if not maybe that is good because they aren’t concerned that you need one yet. I did find out through some of the doctor’s notes that he had MGUS and they had been watching that for 4-5 yrs but we were not aware of that. We were just watching his white count. Ignorance was bliss in that situation. I am sorry you are dealing with this on your own but know that this Mayo site has been a God send for me. Please continue to write and I will try and answer what I can and Lori is great. 🙏
Thank you for your insight.
Over the course of less than a year, I went from fully ambulatory to a cane, then a walker and finally a powered chair. No-one has even considered MDS influencing PD or visa versa. What changes were made in your husband’s PD meds?
My neurologist/movement disorder specialist and hematologist are also not associated with the same medical institution.
You mentioned focusing on your husband’s white count. I have been focused on platelet count, I think I need to look at the other two legs of the stool.
My platelets started their decline in 2018. It wasn’t noticed winter of 2022. I was referred to a hematologist and round one of “watch and wait” started.
My platelets continued their downward spiral. Last March (2024) my hematologist ordered a bone marrow biopsy.
The diagnosis was “Myelodysplastic neoplasm with low blasts and SF3B1 mutation, Myeloid neoplasm with hypercellular marrow (60%) with trilineage dyspoiesis, increased ring sideroblasts (30%), and 4% blasts by morphology “ (I have to look at my notes to figure out what this all means. )
The SF3B1 mutation reputedly puts me in a low-risk category, may be the reason for no other intervention despite a platelet count in the low 40’s?
Thanks again.
My husband had been seen for years for low white count. Hanging around 3.4 ish and then it dropped to 2.4 and at time we were sent to the bone marrow clinic for a biopsy. The bone marrow biopsy showed the high blast. Maybe that is why they are letting you wait and see. His platelets I believe at that time were normal. The neurologist office put him on 4x day carbidopa-levodopa .
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Thank you for your insight.
Over the course of less than a year, I went from fully ambulatory to a cane, then a walker and finally a powered chair. No-one has even considered MDS influencing PD or visa versa. What changes were made in your husband’s PD meds?
My neurologist/movement disorder specialist and hematologist are also not associated with the same medical institution.
You mentioned focusing on your husband’s white count. I have been focused on platelet count, I think I need to look at the other two legs of the stool.
My platelets started their decline in 2018. It wasn’t noticed winter of 2022. I was referred to a hematologist and round one of “watch and wait” started.
My platelets continued their downward spiral. Last March (2024) my hematologist ordered a bone marrow biopsy.
The diagnosis was “Myelodysplastic neoplasm with low blasts and SF3B1 mutation, Myeloid neoplasm with hypercellular marrow (60%) with trilineage dyspoiesis, increased ring sideroblasts (30%), and 4% blasts by morphology “ (I have to look at my notes to figure out what this all means. )
The SF3B1 mutation reputedly puts me in a low-risk category, may be the reason for no other intervention despite a platelet count in the low 40’s?
Thanks again.
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1 ReactionMy husband had been seen for years for low white count. Hanging around 3.4 ish and then it dropped to 2.4 and at time we were sent to the bone marrow clinic for a biopsy. The bone marrow biopsy showed the high blast. Maybe that is why they are letting you wait and see. His platelets I believe at that time were normal. The neurologist office put him on 4x day carbidopa-levodopa .
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Hug
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