Hi @rhodysmom! I see you’ve been a member for a couple of years but this is your first time posting, so let me officially welcome you to Connect!
I do know of one member, @jrwilli1, who had MDS and Parkinson’s. He did have a bone marrow transplant so no longer has the MDS. His lovely wife has been a devoted caregiver and is active in the forum so hopefully she’ll be able to answer any questions you might have.
Were you or a loved on recently diagnosied with one or both of these diseases?
Hi @rhodysmom! I see you’ve been a member for a couple of years but this is your first time posting, so let me officially welcome you to Connect!
I do know of one member, @jrwilli1, who had MDS and Parkinson’s. He did have a bone marrow transplant so no longer has the MDS. His lovely wife has been a devoted caregiver and is active in the forum so hopefully she’ll be able to answer any questions you might have.
Were you or a loved on recently diagnosied with one or both of these diseases?
Lori,
Thanks for responding.
I was diagnosed with Parkinson's in 2011.
My platelets have dropped from 225 in 2018 to 47 currently. I was diagnosed with MDS in March of 2024 following a bone marrow biopsy. It is being watched and it has not been treated. I am not a candidate for bone marrow transplant as I have too many co-morbidities.
I was wondering whether PD and MDS can coexist without major consequences. If there are any special considerations?
Appreciate feedback and advice. Thanks
Barbara
Lori,
Thanks for responding.
I was diagnosed with Parkinson's in 2011.
My platelets have dropped from 225 in 2018 to 47 currently. I was diagnosed with MDS in March of 2024 following a bone marrow biopsy. It is being watched and it has not been treated. I am not a candidate for bone marrow transplant as I have too many co-morbidities.
I was wondering whether PD and MDS can coexist without major consequences. If there are any special considerations?
Appreciate feedback and advice. Thanks
Barbara
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.
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.
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.
I am sorry you had such an uncompassionate reply. I, too, am 71 and was diagnosed with PD last year, but have probably had it for many years. I agree with you that we must not give up and fight for our rights for treatment. Prayer keeps me going, as well as my husband and family members. I pray you find a better response.
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. 🙏
I am sorry you had such an uncompassionate reply. I, too, am 71 and was diagnosed with PD last year, but have probably had it for many years. I agree with you that we must not give up and fight for our rights for treatment. Prayer keeps me going, as well as my husband and family members. I pray you find a better response.
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Anyone diagnosed with MDS and Parkinson's Disease?
Hi @rhodysmom! I see you’ve been a member for a couple of years but this is your first time posting, so let me officially welcome you to Connect!
I do know of one member, @jrwilli1, who had MDS and Parkinson’s. He did have a bone marrow transplant so no longer has the MDS. His lovely wife has been a devoted caregiver and is active in the forum so hopefully she’ll be able to answer any questions you might have.
Were you or a loved on recently diagnosied with one or both of these diseases?
Lori,
Thanks for responding.
I was diagnosed with Parkinson's in 2011.
My platelets have dropped from 225 in 2018 to 47 currently. I was diagnosed with MDS in March of 2024 following a bone marrow biopsy. It is being watched and it has not been treated. I am not a candidate for bone marrow transplant as I have too many co-morbidities.
I was wondering whether PD and MDS can coexist without major consequences. If there are any special considerations?
Appreciate feedback and advice. Thanks
Barbara
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1 Reaction@rhodysmom, you may also wish to follow the support group for Parkinson's:
- Parkinson's Disease Support Group https://connect.mayoclinic.org/group/parkinsons-disease/
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2 ReactionsHello @rhodysmom,
I want to join @colleenyoung, in inviting you to join the Parkinson's support group. We have many discussion groups for PD patients at this link,
- Parkinson's Disease Support Group https://connect.mayoclinic.org/group/parkinsons-disease/
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1 ReactionI 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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Like -
Helpful -
Hug
8 ReactionsThank 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!
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3 ReactionsI am sorry you had such an uncompassionate reply. I, too, am 71 and was diagnosed with PD last year, but have probably had it for many years. I agree with you that we must not give up and fight for our rights for treatment. Prayer keeps me going, as well as my husband and family members. I pray you find a better response.
-
Like -
Helpful -
Hug
3 ReactionsRhodys, 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. 🙏
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8 ReactionsThank you.
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4 Reactions