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dementia and severe brain problems

Discussion in 'General ME/CFS Discussion' started by amaru7, Apr 22, 2014.

  1. amaru7

    amaru7 Senior Member

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    Hello,

    Because of my disease I suffer a kind of amnesia, that's how terrible my brain is. I have no memory at all for what I did even two days ago and even the day yesterday. I can't remember my teachers at school or my fellow students just as an example and I'm not able to read and memorise a book.

    I wonder are there any other people than me suffering like this? Or do I have something else in addition and it's not the ME? On a scale of 1-100 I'd give my brain function a 6

    I see people complain about a variety of symptoms like pain fatigue but rarely such severe brain problems like my dementia strangely even though ME is considered a neurological condition under G93.3, that's why I'd like to know from you, is it the ME? I had it as gradual onset since I was a child .probably.

    Kind regards
    Amaru7
  2. Battery Muncher

    Battery Muncher Senior Member

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    I do not have cognitive problems as bad as this
  3. peggy-sue

    peggy-sue

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    I do.
    Sometimes it's worse than others, B 12 helps a bit.
  4. lnester7

    lnester7 Seven

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    I had them some because of OI, but the biggest was HH6V! which I am still trying to kill. But I am doing so much better! and I know of other people that say the same, once you address the source, you will get better, the losses are not permanent!!!
    maryb, SDSue and vamah like this.
  5. Helen

    Helen Senior Member

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    As B12 and/or folate deficiencies are common among people on this site (most prooved due to genetics) , did you get checked for these with blood tests (though they may not show up even if you are low) ? Are your COMT polymorphisms the only ones on a Methylation profile?
    amaru7 likes this.
  6. wastwater

    wastwater Senior Member

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    My brain symptoms are like youres
  7. SOC

    SOC Moderator and Senior Member

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    @amaru7, I had severe cognitive dysfunction. I couldn't read a book, or drive, or remember ordinary things. For me, like @Inester7, the primary culprit appears to be HHV6. Treating it with Valcyte improves my cognitive function tremendously, although it's not a fast treatment and may need to be repeated. When my HHV6 reactivated, the cognitive dysfunction came back, but Valcyte is returning my cognitive dysfunction again.

    Treating OI also helped with cognitive dysfunction, although not as much as the Valcyte. Still, every bit helps. :D
  8. alex3619

    alex3619 Senior Member

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    I have high cognitive capacity in some things, and near zero in others. I have described our issues as slow progressive partial episodic amnesia. I recently got tested for dementia, where they use semantic memory testing. For us that is a nonsense, I aced the test doing better than any other patient tested this year. Yet I can't remember or focus enough to get a basic shopping list right. I don't often know what I ate yesterday. I have almost no memory of specific events in my past aside from facts about them, which is semantic memory.
    merylg, SDSue, amaru7 and 2 others like this.
  9. caledonia

    caledonia

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    At one point, I was unable to read a book or drive without getting lost. There where problems getting lost in the middle of what I was saying, recalling words and memories and so on. 100mg CoQ10 daily worked wonders.

    Now that I've been working on methylation, I don't need the CoQ10 any more and my brain function is still retained.

    Methylfolate and B12 are used, after several conversions, to eventually make CoQ10.

    I don't think I have the HHV6 problem others are talking about.
    Wayne likes this.
  10. PNR2008

    PNR2008 Senior Member

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    I can almost be savant on some things and totally blank on others. Old memories are still intact, I can remember conversations, situations, rooms and places like a photo. When I go to reunions I can recall a ring a friends brother used to wear, cars, dresses or outfits I and others wore many of this from 40 years ago.

    Yet open a drawer looking for a clip, certain make-up, a bill or paperwork of any kind and I could scream that could be heard by my Aussie friends

    A weird thing I do is know what someone means when they speak in different languages I can't understand or know what people are talking about too far away to hear but I guess by their body language. So I know my brain still works in one capacity but not in some very "easy" ways.
    merylg likes this.
  11. Wayne

    Wayne Senior Member

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    Thanks for your descriptions Alex. I'm the same way. I sometimes wonder if the brain is somewhat like the body in the way it "compensates". If a person loses an arm, the other arm will become much stronger to compensate. Could certain parts of our brains end up compensating for other parts that have become disabled?
    justy and merylg like this.
  12. alex3619

    alex3619 Senior Member

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    Actually I have asked the very same question @Wayne. I think we do make compensations, including cognitive compensations. I also think that some of these are mislabeled as "aberrant" or "dysfunctional" by some psychiatrists, whereas they are necessary changes to cope.
    Snowdrop, merylg and Wayne like this.
  13. SDSue

    SDSue Florida

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    I describe mine as a "swiss cheese brain" - various sized holes of missing information in no particular pattern.

    It started with short term memory loss, which my friends chalked up to age but I knew was something more sinister. It progressed to loss of working memory (transposing numbers, math in head) and finally loss of what I call my basic memory (on bad days I have trouble naming colors, can't find words, forget my kids names, can't remember where a stamp goes on a letter).

    I stopped driving not only because of the physical toll, but because I got lost going to places I've been for 15 years.

    I can converse reasonably well other than losing words and train of thought, which makes me seem a whole lot more functional than I am. But I do fear that I ramble.

    I am clinging to the hope of others who've gone before us and are improved! There are days we give up, but as long as they are outnumbered by the days we fight, we will be OK.
    Wayne, maryb, alex3619 and 1 other person like this.
  14. Martial

    Martial Senior Member

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    I had severe dementia like issues even with points of very mild physical issues in my body. Wakig up not knowing who or where I was, feeling like I didn't recognize anything, no sense of connection with anyone, etc..

    I remember my slow decline in school, I eventually kept waking up and forgetting I had school that day, and just the usual task stuff I have running in my mind was gone..
    Millions of weird things like that without classical "brain fog"..

    I have Lyme though and it seems like others have similar issues like this with it, also with CFS

    I am extremely intelligent still and can do a lot of other things, its just things like recall, or memory things that are just gone, so, so weird, but does get better!
    peggy-sue, Wayne, SDSue and 2 others like this.
  15. alex3619

    alex3619 Senior Member

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    Yes, I have called it Swiss cheese too. :) More holes than cheese.

    Back when I was studying IT, I think during my PhD candidacy, I had a day when I really did have amnesia, but only for a day. I managed to figure out where I lived, which was not easy as I had ID with ten different addresses, then went home and slept. I woke up back to my usual stuffed self, not my amnesiac self.
    Wayne, SDSue and maryb like this.
  16. Sea

    Sea Senior Member

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    Even though we use the term dementia to describe our severe cognitive deficits, one of the main differences between what we experience and true dementia is our awareness of what we're missing. We know our brains are dysfunctional and our memory is poor.

    A person with dementia is usually unaware of their state and it is those around them who start to notice the changes.
    Hanna and SDSue like this.
  17. Martial

    Martial Senior Member

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    Very true, and I do not ever mean to imply that our challenges are nearly as great as those with an actual case of dementia either.. Just that the symptoms have very strong similarities to changes due to cases of dementia.

    I had a grandfather to my sister in law who suffered from Alzheimer's for a few years before his death and it was as if his consciousness itself was reverting more and more in a regressive state. Strikingly similar to an infant's perception right before his death.. He would play with baby toys and had a similar state of being akin to a newborn child.
  18. SDSue

    SDSue Florida

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    From Altzheimers.org :
    "People with vascular dementia tend to maintain their personality and more normal levels of emotional responsiveness until the later stages of the disease. This sometimes means that people with vascular dementia are more aware of their condition and more prone to depression than people with Alzheimer's disease."

    Perhaps it is unfair to deny that our cognitive difficulties may actually be a dementia similar to the vascular type? I've never been a huge fan of the term "brain fog" as it sounds cute and insignificant. I know my brain losses are more serious than just a fog. Yet, I'm not so sure I want the label of "demented" either.

    And so it goes in the world of ME/CFS labels. Sigh
  19. SOC

    SOC Moderator and Senior Member

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    In the course of my illness, I've had distinct cognitive deficits -- poor memory, poor focus, word-finding problems, and so on. At other times, maybe even simultaneously, I've had something that is much better described as brain fog. It is more like walking around in a mental fog, not the same as actual cognitive deficits. Perhaps it is related to mental fatigue, while the other symptoms are more connected to mild encephalitis?
    Little Bluestem and SDSue like this.
  20. Martial

    Martial Senior Member

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    Well hypo perfusion is another huge component for a lot of people so this is something else to take into consideration too, literally working with half your normal brain due to decreased oxygen levels.
    Little Bluestem, peggy-sue and SDSue like this.

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