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MDS and cognitive decline

Posted by bradmm @bradmm, Mar 5, 2019

Just curious, if there is less oxygen going to the brain as a result of lower levels of hemoglobin, will that cause cognitive decline?

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katgob | @katgob | Jan 2, 2025
In reply to @pixiesusan "How long ago was your transplant? I, too, have the TP53 gene, and I feel like..." + (show)
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How long ago was your transplant? I, too, have the TP53 gene, and I feel like I have a ticking time bomb in me. Right now, I'm not at the point where I can get a transplant, but that day will come.

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pixiesusan- I had my transplant April 9, 2024. I had it done at the City of Hope in Duarte. I found this site when i was first diagnosed and Lori and others walked me through diagnosis and treatment. I hope you see a hematology Dr. who will monitor. During the breast cancer of July 2021 till final treatment in June of 2023 I had blood test every 3 weeks. No one flagged my blood numbers. That my white cells and platelets had not recovered in August and were in fact still dropping below minimums. I had had a blood clot follow the BC surgery so i contacted the vascular department to make an appointment with hematology. Three weeks later i got call from a great person on the appointment line who got the ball rolling.
The Doctors monitoring and a bone marrow biopsy will let you know when the time may be right.

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revbobcoulson | @revbobcoulson | Jan 2, 2025
In reply to @darci39 "I’ve been noticing it it with my husband who was dx with autoimmune aplastic anemia. He..." + (show)
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I’ve been noticing it it with my husband who was dx with autoimmune aplastic anemia. He has had ATG, and blood and platelets every week since May and nothing is working. He was on Cyclosporine , but that hard on his kidneys. He is now on Tacrolimis and high dose steroids and that’s when I started to notice the hearing issues and occasional not comprehending what I was saying to him. He keeps calling oir dogs and his friends by the wrong name.

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May be tx related or something else so maybe have a dementia screen early detection has some options but people who wait too long not so much and have hearing tested. There is a simple paper one on line if answered truthfully. An audiology test would be helpful to see if hearing is blocked or impaired.

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healthtree | @healthtree | May 19 12:53pm
In reply to @bdglass "I'm interested in this topic, because I have MDS. I have been receiving weekly injections of..." + (show)
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I'm interested in this topic, because I have MDS. I have been receiving weekly injections of 40,000 units of Procrit for a couple of years, but my hematologist recently increased the dosage to 60,000 units when my hemoglobin began to drop a bit.

Meanwhile, I've had some concern about my cognitive abilities but have attributed my issues to my being 82 which is still probably one cause of my slow decline. Now, as I read these comments I'm wondering if MDS is also one cause of my memory issues.

So, where can I learn more about MDS and cognitive functioning? I will follow comments here but would also be interested in where I might do research online. I have an appointment with my hematologist next week and will also ask him what he thinks.

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@bdglass
I also have cognitive decline, which I attribute to reduced blood flow to the brain. Plus lack of exercise because of fatigue.

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pixiesusan | @pixiesusan | May 20 6:48am
In reply to @katgob "pixiesusan- I had my transplant April 9, 2024. I had it done at the City of..." + (show)
Profile picture for katgob @katgob

pixiesusan- I had my transplant April 9, 2024. I had it done at the City of Hope in Duarte. I found this site when i was first diagnosed and Lori and others walked me through diagnosis and treatment. I hope you see a hematology Dr. who will monitor. During the breast cancer of July 2021 till final treatment in June of 2023 I had blood test every 3 weeks. No one flagged my blood numbers. That my white cells and platelets had not recovered in August and were in fact still dropping below minimums. I had had a blood clot follow the BC surgery so i contacted the vascular department to make an appointment with hematology. Three weeks later i got call from a great person on the appointment line who got the ball rolling.
The Doctors monitoring and a bone marrow biopsy will let you know when the time may be right.

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@katgob I'm mostly likely not a candidate for a transplant. I had my second BMB in March and not much has changed so for now that's good.

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katgob | @katgob | May 20 11:08am
In reply to @pixiesusan "@katgob I'm mostly likely not a candidate for a transplant. I had my second BMB in..." + (show)
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@katgob I'm mostly likely not a candidate for a transplant. I had my second BMB in March and not much has changed so for now that's good.

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@pixiesusan
I hope you stay stable. They have many treatments at the research hospitals and of course on Mayo Connect you can ask the questions and get links to find some answers.

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Lori, Volunteer Mentor | @loribmt | May 21 9:42am
In reply to @healthtree "@bdglass I also have cognitive decline, which I attribute to reduced blood flow to the brain...." + (show)
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@bdglass
I also have cognitive decline, which I attribute to reduced blood flow to the brain. Plus lack of exercise because of fatigue.

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Welcome to Connect, @healthtree.
MDS (Myelodyplastic syndromes) can be a very frustrating disease with some of the side effects. I’m sorry to see that you’re experiencing cognitive decline along with fatigue. How long ago were you diagnosed with MDS? Are you currently receiving any treatment?

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bentley06 | @bentley06 | 6 days ago
In reply to @bradmm "No, not offensive at all, just wanted to clarify that this was about my wife. I..." + (show)
Profile picture for bradmm @bradmm

No, not offensive at all, just wanted to clarify that this was about my wife. I would like to hear from actual people with experience with this.

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@bradmm
My husband is current at low risk but I have noticed his focus and understanding is slipping . I try to be understanding and patient but it is difficult at time when he gets upset

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Lori, Volunteer Mentor | @loribmt | 6 days ago
In reply to @bentley06 "@bradmm My husband is current at low risk but I have noticed his focus and understanding..." + (show)
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@bradmm
My husband is current at low risk but I have noticed his focus and understanding is slipping . I try to be understanding and patient but it is difficult at time when he gets upset

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Hi @bentley06 It’s very unsettling when we notice health changes in our loved ones. I’m sorry to see that your husband is experiencing difficulty with focusing and comprehension.
You mentioned that he has low-risk MDS, which is a form of blood cancer where there may be a decline in production of one or more of the types of blood cells. If he has a lower than normal level of red blood cells, which carry oxygen through the body, sometimes that can impact the brain.
Is his red blood cell count lower?
Also, have you or your husband mentioned to his Primary care doctor or his hematologist of his decline in mental acuity? Do they feel it is related to MDS or possibly aging?

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