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Anyone have both Myelodysplastic Syndrome (MDS) & Parkinson's?
Parkinson's Disease | Last Active: 3 days ago | Replies (12)Comment receiving replies
I have posted before in both areas of MDS and Parkinson’s. Yes my husband has now had Parkinson’s for 8 yrs or more and in Sept of 2022 was diagnosed with MDS. In Feb 2023 received his bone marrow transplant. Not saying it was an easy road but as of Feb 15, 2025 he is 2 years post transplant and remains 100% donor. His Parkinson’s did act up at times and as the neurologist says Parkinson’s doesn’t know how to react with some of these cancers. Our road still has one more hiccup. He has a fungus in his lungs and it has been read a couple of times as suspicious for neoplasm so per a Pet scan he has several new spots yet they are hoping it is just an infectious process from the recent flu A he had. So he will have a repeat Pet scan in 3 months. But the sad thing is when my husband asked what they would do if it was cancer the Dr. said “Well you are 71 yrs old and you have Parkinson’s.” We were totally taken back with that statement. We will not just accept that is this would be the case. So if you have Parkinson’s and get MDS be your own advocate and do your homework. Pray a lot and fight.
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Thank you for your reply. Your husband is blessed to have you advocating for him and supporting him.
Do your husband's doctors communicate with each other? There is no communication between my hematologist and my movement disorder specialist, causing misunderstandings and delays, and putting me in the position of courier. Both doctors filter their opinions through the lens of their specialty.
On the PD side, DBS was in discussion . I was also scheduled for a reverse shoulder replacement - I am unable to use a walker and my fall risk is in the stratosphere. Both were not recommended by my MDS doctor. My motor skills, meanwhile, have headed south.
My current MDS plan of care is to “watch and wait” rather than intervene. “Comorbidities” and a plateauing of platelet and hemoglobin numbers are cited as the reasons. The “plateau” is not evident to me as a layman, and I can’t get a definitive id of my “comorbidities. ” My platelet counts seem to be declining at the same rate they have over the last 6 years and indicate impact with the axis in two years without some change of course.
Being an army of one is exhausting!