Memory loss?

[Chiparoo]

Hi All!

Has anyone with MDS experienced any kind of memory loss? Or loss of comprehension? And I’m not talking about possible side effects from any of the medication we may be taking in order to keep our MDS at bay. I was experiencing this before I received any significant treatment. I know my body isn’t 100%, so my brain doesn’t have the “crispness” it used to have. I found a doctor in Boston doing memory testing on MDS patients (not intended to be a joke…I forgot her name!), but she can’t reveal any of her findings until the research is complete. Any thoughts?

Hope all of you are well!
Chip
——————–
48, Dx w/ RARS April 03. Long arm of chromosome #20 missing. On B6. Unsuccessful month w/Thalidomide (severe neuropathy) Jan 04. RAEB discovered after 4th BMB in Aug 05. 2 rounds of Vidaza, Weekly Procrit. Neulasta as needed

[lindajo]

When we met at the aamds convention in Baltimore all of the other patients I talked to mentioned this problem. My “brain fog” increases as my counts drop or if I have an infection. It seems to be better if my hematocrit is above 10.0.

It isn’t really anything to worry about but it is annoying.

[Jack_dup1]

I don’t know if it is the MDS or the diagnosis, I find it harder to concentrate on things which in turn, affects memory.
Jack

[patti]

Chip,

I’m finding as my MIL’s MDS has started causing more damage to her internal organs that her memory is getting really bad. She’s also getting more moody. I’m just assuming it’s a biological thing because she’s never been like that. Here’s what I think: depending on a person’s blood counts, you can only starve the brain/body of blood for so long before you will start to have problems with your memory. Although transfusions might bring someone close to normal (mom NEVER hits a normal HGB) a person is still chronically anemic and that is going to have an affect at some point. I would think it would be worse for the more severe types of MDS or with someone whose had MDS a very long time. Just my two cents worth. It might not even be worth that.

Patti

[Caroline]

My Dad is getting very absent-minded and extremely irritable. He has never been what you would call an easy-going man. He used to be very intense and passionate about things in a good way, of course. Now he is either passive to the point of appearing like he just doesn’t care OR he can turn on a dime and become very irritable over very small things. I keep putting it down to the fact that he is probably so fatigued all the time but I am sure that there are other physiological reasons as well. I haven’t had a chance to speak with the Oncologist alone. I was supposed to speak with him on the phone today but it turns out that the office is closed to observe Rememberance Day. I will try again on Monday.

Blessings,
Caroline

[Suzanne]

Well guys, disease or chemo who knows-and it has been 3 years since I was diagnosed so maybe age is a factor. But I definitely have trouble focusing, absorbing new information,multi-tasking and if too much is going on around me I just can’t function. My Dr’s say it is the chemo. It has improved(I used to find #’s in my check book that I had no idea where they came from-Now I just lose bills leave my keys in the ignition & car engine running and a few other wierd things.) As long as life stays relatively simple and stress free I do fine but I sure have noticed the difference in brain function when I tried to go back to work in several low level capacities I expected to be easy for me and were not! So I try to keep my life at a level I can handle and enjoy.

[Suzanne]

By the way when I try to describe what is happening-all my friends say -age and that they have the same memory lapses-but I know it is more-I always say that if they had not told me it was the chemo, I would be getting my self checked out for early onset alzhimers.

[Chiparoo]

Thanks for your feedback on memory loss. My mother said it’s the age thing too! I will tell you one thing about what’s happened to me over the last few years since being diagnosed, especially the last 2 1/2 months on treatment; I have an awareness about my body and its functions that I didn’t have before. So I know that my memory or concentration is not what it was. I find it curious that ALL of us, no matter what age, have experienced this. Hopefully, as we all get the treatment we need to be free of our disease, the functions will return. I get tired of going to the garage to get something and forgeting what it was I went out there for!

Chip
——————–
48, Dx w/ RARS April 03. Long arm of chromosome #20 missing. On B6. Unsuccessful month w/Thalidomide (severe neuropathy) Jan 04. RAEB discovered after 4th BMB in Aug 05.
2 rounds of Vidaza, Weekly Procrit. Neulasta as needed.

[Suzanne]

I have been in remission for quite a while and have not taken any drugs since March . the “mental confusion” has improved a lot but as I said, things are still not quite right. At this point, I suspect they will never be totally back and the best thing is to be aware of the limitations and work around them. I am looking carefully at job descriptions that I might consider and also at how much I take on in responsibility for young grandchildren. It was with taking them to McDonalds on my own after a long stressful day that I definitely left my keys in the ignition and may have left the motor running in my car (thank goodness they were not in it) I had gotten out quickly as one of them had opened the back door and I did not want him exiting the car into the parking lot on his own.Did not realize anything was amiss until I could not find my keys when we were ready to leave.So I will be especially careful about how much is going on when I have little ones on my own.I am so glad to be “healthy” and alive that this seems to be a small problem and not really hard to deal with if you are aware of it. I still have not figured out whether the mailman lost some bills several times, I put them someplace where they have never turned up, or I somehow threw them out more then once by mistake-Soo I am very careful with mail and bills and balancing my check book! what fun!

[Sad About Dad]

Chip,

Before my father was diagnosed with MDS we use to tease him that he had half timers. LOL (Alzheimer’s) He could remember half the time what he had said the day before.

As his MDS progressed his memory got worse. You could see how upset he was about trying to focus. He would say I just can’t think anymore. Before he passed he could not keep his train of the thought and would stop in mid sentence.

He paced a lot and I mean a lot. Even at night my mother said he would get up and go lay on the couch then come bak to the bedroom. The doctor said his pacing had a lot to do with his organs shutting down.

I guess we are like a fine tuned ship. When things get out of wack like the blood then something else fails.

The half timers kind of seemed funny to all of us at the time. Even my father laughed. But now it doesn’t really seem so funny.

[Caroline]

We tease my Dad about being absent minded too although my Mom gets after him alot. He doesn’t find it very funny. Then I feel badly. He is trying to hide his symptoms the best he can. Mom doesn’t want to admit to herself that her strong husband has an illness that she cannot fix so she tries to force him to think more clearly but he cannot. It doesn’t matter what I say to her, she keeps it up. The other night we went over for cake for my birthday and he told her to Shut Up while we were all sitting at the table. I have NEVER heard him say that before, especially not to a lady. Apparently, he does that alot now. He talks to her as though they are both kids.

Caroline

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