Memory loss, cognitive dysfuntion

[lindajo]

In this month’s medical q&A section of the aplastic anemia mds international foundation newsletter there was a question about whether patients with MDS experience cognitive dysfunction or memory problems. The answer bothered me because it said it wasn’t a result of MDS or aplastic anemia.

Talking with other patients on the forum and at convention makes me think otherwise. I was 30 when I was diagnosed. Prior to my initial illness I had no memory problems or cognitive dysfunction. When my counts drop to between a 9 and 10 Hemoglobin count I have episodes of “brain fog” some times I can’t remember what I have read, immediately after reading it or add and subtract or remember family members names or those of friends. It becomes difficult to carry on a conversation or complete any mental task.

Do they rest of you have these problems? I found at convention it was something we all had in common but very few patients mentioned it to their doctors. I feel that is necessary that our doctors and researchers know about these symptoms so that they get the whole picture of the disease. How do they rest of you feel. Lindajo

[gemloyear]

Lindajo, You’re right.I’m sure that the drop in blood counts causes problems in memory, concentrating and thinking. When my husbands counts are up he has no problem thinking, memory etc. We have mentioned it to the Dr., and she has said that is to be expected when counts are low, hgb. etc. It makes sense when oxygen to the brain is low. It has been spoken of in the past by various people on the forum, some who are relatively young. There are supplements that are supposed to benefit the brain, just be sure they are compatible with other meds that you are taking. If I remember correctly q10 and MSM are two I’ve seen mentioned.I’m sure you will hear from many others regarding this.Yes I do think these symptons should be recognized as a side affect of these diseases. As we age we can expect to have memory loss, but I would think it must be especially annoying to younger people who are still out in the working world
Take care , Ellie

[CarolineG]

Lindajo,

I agree with you and Ellie. We noticed changes in my Dad as soon as he was diagnosed with MDS. It began as a vagueness. Maybe that is the ‘brain fog’ which you referred to. Now almost 4 years later, he has CMML and kidney failure. He has been ‘officially’ diagnosed with dementia and infection delerium (I think that was what they called it.) Some days he does pretty well and you would think that he could manage on his own. Other days he doesn’t remember much or talk to anyone except to say Yes, No and I Don’t Care. I think it all depends on what his blood counts are doing at that particular time. Dad was checked for Alzheimer’s but the Gerontologist assured us that he has not got that disease. His best guess was that Dad’s blood oxygen levels change with the MDS/CMML and his toxicity levels change with his bad kidneys.

Best Wishes,
Caroline

[patti]

Linda,

I have to agree with you. I’ve seen mom’s mental function progressively deteriorate since being diagnosed. Definately worse when her counts are low but I see a general change even when her HGB is 10. We’ve mentioned it to mom’s doc and she says it’s related but blows it off other than that.

patti

[Cindy]

Lindajo,
I also experience cognitive changes and also notice a difference with the three to four weeks between transfusions. I find I can’t focus on TV near transfusion time and, at church, I miss saying words to psalms and I am reading the words.
I was a person who didn’t need lists to remember things that needed to be done or dates of future events. However I now double schedule myself if I haven’t checked my calendar.
Thankfully I don’t have much trouble at work so far but the information is so ingrained. I do forget people’s names tho.
I agree with you, more research needs to be done on this at the center of excellences.

[Naomi]

LindaJo:
I can certainly relate. I get lapses all the time and it comes to me later. I thought it was due to getting older. It was really bothering me. I can talk to someone I know well and call them by another name. Now I can explain that this is part of the medical problem that I have.
I will mention this to my hemo doc and see what he says.
Naomi

[Suzanne]

I definitely had this too although my doctors said the cause was the chemo and never mentioned it as part of the disease. They even called it “chemo brain”. Everyone I know told me it was just aging and I was always trying to explain that this was more then that. My counts have been fine fir almost 2 years. My docs said it was not unusual – might clear up with time or be permanent. At this point-one year from taking any meds and in the process of trying a new job it feels as if there might be some improvement but I am still making mistakes in my check book and working hard to absorb new information.

[Jack_dup1]

I would not put to much stock in that newsletter, it also said that nutritional supplements are most likely more harmfull that helpfull and that you should discuss it with you Doctor. Try telling your Doctor you are juicing pineapple or eating raw sesame seeds, it’s fun to watch there eyes roll.
Jack

[lindajo]

I too have heard of “chemo brain” the problem with me is I have only had supportive care, I have never had chemo. I think because so many of the patients with our disease are older than 55 the doctors aren’t realizing it isn’t due to normal aging.

I was only 30 when this disease entered my life. Now that I am stable I have less problems at 45 than I did at 30 so I feel confident it is a symptom of the disease.

[Author]

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