Dementia

[Conrad]

Has anyone ever heard of dementia being a side effect of MDS or of MDS treatment? My sister-in-law was diagnosed with MDS last year and had several courses of treatment including azocytidine (Vidaza?). She seemed to respond well and has been fairly healthy recently although hasn’t had a check-up for a while.
Problem is now that she seems to be showing signs of confusion and forgetfulness. Sounds like some form of dementia to me. She is only young (29 years) and there is no similar history. Young for MDS and young for dementia.
I was wondering there could be a link.

[patti]

Conrad,

I don’t know if it’s actually “dementia” per se but there are a couple of possibilities. I know people talk about having “chemo brain” after using chemo and Vidaza is chemotherapy. So it’s possible that’s what she’s experiencing. I think some say that goes away after the chemo is done and time has passed.

I’m not sure how long your sister has had MDS or what cell lines are affected but I talked to my MIL’s naturapath about this issue a few weeks ago. My MIL has been very quickly going downhill mentally. Forgetful, cantankerous, sometimes outright mean. The naturapath said there are two types of people. Those whose disease affects the brain immediately and one sees a slow but steady decline and then those that might be sick for a long period of time and one day they just change. It’s quick and seems to happen in one day. That is what has happened to my MIL. Almost overnight she got very forgetful and her moods are totally unpredictable. She expects us to know things we would never be able to know unless she told us (like phone calls she’s received or her lawn needing mowing, etc). While some say there is no connection, I think there is. I think determining if it’s a slow downhill decline vs. a quick decline is the only difference.

All the best,

Patti

[uno grasshopper]

I recently read a book called Racing for a Cure by Neil Ruzic. In his book he wrote regarding “chemo brain” that Darthmouth Medical School had a study which reported that people who take ordinary doses of chemo drugs are twice as likely to suffer brain impairment as cancer patients who have had only surgery or radiation. The Darthmouth psychologist who conducted the study tested people 10 years after they underwent chemo. He found that they thought more slowly, had a harder time comprehending what they read, forgot more easily, and did mental math with considerably more difficulty than those in a group of non-chemo cancer patients who were tracked over the same 10 years.

So yeah, that seems to indicated that the Vidaza may have affected her mental capacity a bit. And also remember that some people’s blood brain barrier is more permeable than others’ depending upon their health condition.

Marla

[lindajo]

When I attended the Aplastic Anemia and MDS foundation convention two years ago every patient I talked to talked about having brain fog.

I too was 29 when diagnosed. My brain seems to power down and save energy just like a computer does. When my counts are in the 8-9 range I cannot remember my daughter’s name. I will remember her nickname but not her given name. I also tend to swear more as my hemoglobin and hematocrit drop. I end up sounding like a foul mouth truckdriver. Normally I don’t swear.

When my counts get above 10.5 and a hematocrit of 28 the brain fog disappears.

I also limit my reading and writing to 1-2 hours a day or I can really tell that my brain is overtaxed. It isn’t a permanent thing it comes and goes on a daily basis. There are times during the day when I am articulate and times when I am dumber than a rock. Your sister will learn to adapt.

If you think about it when you have a severe virus or the flu you may act incoherent at times. It goes with the territory. Linda jo

[uno grasshopper]

Hmm. I’ve never been to any of those meetings, but I feel pretty confident that I didn’t have problems with brain fog. Depression, yes; Fatigue, yes; even irritability, but trouble thinking? No. I’ve NEVER forgotten my kids’ names. Maybe it was my diet change, I don’t know, but I really think I did my best thinking *after* I got AA. More time to think. More time to sort out what matters in life to me. Plus I read more books during my recovery than any other time in my life. I even wrote notes which I still go back to for reference today. I was transfusion dependent for 19 months and waited for as low as I could go, meaning my hgb would hit the 6s and 5s a lot. I even went down to 3.7 once, and the only thing keeping me from talking while at the emergency room was energy problems. Other than that, I could hear and think about what they were talking about around me.

I wouldn’t blame mental fog all on anemia. I’ve also met sickle cell patients and thalassemia patients who are commonly anemic and have been so since they were 2 years old yet now probably in their 30s. That’s a long time with anemia and they didn’t discuss mental fog with me during our many hours hanging out at the transfusion center. Although I would concede that some people may need a higher hgb to function normally, I don’t believe it’s universal. Remember that there are other causes for mental fog, too, and just cause a person has anemia, doesn’t mean he/she can’t have any other health issues going on since there are lots of people who also suffer brain fog who *aren’t* anemic.

Just some thoughts.

Lindajo: I noticed on your signature line that you stopped vits and had to get transfused, so started back on them. Have you been able to avoid transfusions again once you resumed your vits? I hope so. And if so, that’s very lucky for you to have found something that really works for you!

Marla

[lindajo]

Yes I have been able to avoid transfusions since going back on my vitamins and my bone marrow results showed an improvent also. I did however come up with a nasty staph infection this winter and lost 20 lbs with it. My counts are going up and down again for no apparant reason. I expect the only thing to be constant is that my condition will change whenever it wants.

[uno grasshopper]

Lindajo:

That’s great to hear that the vits have been able to keep you above transfusion level. Would you mind sharing which vits, dosages, and brands you take? I’m always interested to know what natural things have helped others.

I recently visited another MDSer’s web blog which discusses her interest in trying a natural approach to treat her MDS. She is taking Aranesp, but seems to feel that her new nutritional approach is helping her, too, along with other supplements. Apparently it has now been 2 1/2 months since her last blood transfusion. If interested, check out her blog at http://crystalmontoya.typepad.com/my_weblog/2006/07/are_you_a_perso_1.html

Thanks, and take care!

Marla

[Terri]

Recently when Bob started losing some of his motor skills, walking a little sluggish unbalanced his brain also was not processing things well. Does your sister have any other signs. Bob had a subdural brain bleed due to the low plts and only the Cat scan was able to show it but he definately wasn;t thinking the sharpest, but he had other things deteriate. Now he is a little unbalanced but walking much better, and his tought process is better. Don’t know if the blood is absorbing or just moved off the portion of the brain that was pressuring the area controling the motor skills.
Just a thought.

[lindajo]

I will post my vitamin list next week. Our internet connection at home has had trouble all week. I am at the library right now just to check in. My list is at home.

I did start out with a brain swelling infection when I was initially diagnosed. Since I was so young, 29, they didn’t look for MDS and things got out of control quickly when an ice storm hit and I was unable to get to an emergency room.

I feel that the reason I have brain fog is from the infection, an indiredt result of MDS not a direct symptom.

I ran fevers 3-4 days a week for the first 14 years. Since having nose surgery a year and a half ago to remove a damaged septum my sinus infections have been greatly reduced and so have the fevers.

It took 14 years to find a surgeon who would consider doing surgery on me and then I had to wait until the laser scalple was approved.

The meetings I was talking about was the National AA-MDS convention in Baltimore MD a couple of years ago. This year it is in Nashville, next week I think. I just moved so I am not strong enough to go this year. If you get a chance to go next year include it in your plans. Their website will have transcripts and DVD’s of the speakers available. There is a link on this website to theirs. Lindajo

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