Cognitive Dysfunction, What Parts of your Brain are Missing??

[Marco]

Not much I can add on the cognitive symptoms apart from what has already been discussed.

What I can add is touch sensitivity (remember the clothes sensitivity thread) and the effect that cognitive fatigue has on my physical capabilities.

During a crash I lose all power and co-ordination. I am unable to walk at much more than a very slow shuffle, head bent, feels like I'm walking on sand, limbs feel heavy and joints sore and I develop a right leg limp.

Prior to the crash I was usually fine, no problems walking, no muscle fatigue, little pain etc and the crash can be triggered by physical or mental overexertion.

As the physical problems during a crash don't appear to be directly related to anything that would cause muscle fatigue etc, plus I've never sustained an injury that would explain the limp, I can only conclude that the gait problems are due to cognitive fatigue or a signalling problem.

 

[Marco]

Meant to add - but forgot.

Something else that is very frequent for me - and developed 12 years into illness.

After driving for even short distances , for hours afterwards I feel as if I'm still moving.

A similar problem at bedtime when I'll lie awake for hours with the day's events (or non events) going through my mind. Even pleasurable experiences lead to a massive over-stimulation.

What it feels like to me subjectively is that events happen at a rate that's too fast for the brain to process at the time and there is a long latency period where the brain is working to 'catch-up' on processing everything that's happened.

Same with multi-tasking. Too much data and the brain works too slowly to process it all.

 

[lucy]

* Friend names - like I remember this girl is one of the girls I know well, but which is it?
* The loss of the big-concept understanding - only small fragments of information and not being able to put it in the big picture, such as in the library, I could understand if the book was not the one I needed, but how to find the correct shelf I had no idea.
* Not being sure if I already told the thing, so I would start 'I probably already told you' (but all the times it appeared I didn't)
the same is at work, I do not remember if I was allready doing a certain task, or it is a new one, so treating everything like new (many times it appeared I did them before)
* Attention limit - not being able to follow when it is reached, getting bored with other ppl very fast
* Word finding, inventing new words when failing to find
* Remembering my intentions (i got a theory that one brain part tells me I should do something, I start doing, and then the part which is supposed to take over is wondering, why am I in this room, or where was I going in the city)
* Gait problems too - my collegues told they can tell how ill I am from my walking, I noticed weight distribution difference - when more ill than usually, weight is at the back of the step, in the middle when feeling ok
* Audio part seemed to become more active, while it never before was active - some kind of thinking in sounds, memorizing sounds.
* Color madness - all colors are very beautifull to me now, while before I only got high from some shades of blue (maybe it is the effect of SSRIs)
* Balance - I had really good one before, being able to do different movements while standing on the ball of the feet of one leg, and now I sometimes almost fall when I walk and have to do a slight turn
* Spending time without doing anything or moving - before my brain would tell it is not ok, now it does not tell anything
* Confuse left and right all the time (but in my mind I correctly imagine the side, just choose the wrong word), and when somebody corrects me, I say: yeah, the other right/left
* Overstimulation - things like table games would totally overstimmulate me, even if I knew it would

In any case, all this made me to realize, that even without the working brain something remains out of me and the brain should not be taken for granted

 

[alex3619]

My cognitive issues, part one (because I have so many)

Wow, George, when we decided this thread was a good idea, I didn't realize my first post would be on or after page 3! I have a lot to say, so here goes:

Caveats: this is what I remember. For obvious reasons what I remember is limited. I am a very long term patient - diagnosed in 89, sick constantly since 85, possibly caused in 68 by measles encephalitis - I was 7.

Memory: Like George I have very little visual memory. I call this episodic memory, after episodes or events. I don't remember them. I remember ideas: this is semantic memory. It is the last thing to decline in very severe cognitive crashes - I lose speech before semantic memory. I remember the idea of an event, and I can (usually) construct coherent sentences, so I can fake having a memory and most people don't seem to notice. Like George, I used to be able to remember lots. If you asked me what was the second sentence on para 2 on page 213 of a book I read once, I could have told you. Now it would be: have I read that book?

Words: I forget words. Sometimes I use a similar words ("replaceables" instead of "consumeables" for example, or the classic "library" instread of "bookshop" and vice versa). Similarity can also be from sound not meaning, but I forget any examples.

Sentences: I forget what I was saying halfway through saying it, so I make up a different ending to my sentences. In writing, like on PR, I focus on what I am writing now and I can drift my focus - I am constantly surprised that I don't ramble ... oh, wait, maybe I just don't recall rambling. I had to write two pages of notes before writing this post, and I will probably go back over it at least once before posting.This gives me tolerance when I read rambling or off-topic posts - I can hardly be mad at someone else for doing what I could so easily do!

Speech: I used to have very clear diction. Now my speech is slurred. When I am very tired (no sleep at all for two days or more, or only an hour a night for three days or so) I lose the power of speech. I understand what others are saying, I just can't talk. Prior to loss of speech, I find I can only mimic other's words. Whatever words they say, I can use, I can't come up with my own. So my vocab is limited to only the few dozen words I recall. At the end of one of these conversations, with my speech finally gone, I wound up making raspberry noises over the phone to my brother.

Numeracy: I have a classic example that I do recall, even though it was long ago - but only in outline. I was playing a tabletop wargame (ok, so I'm a geek!) when I had to assign a range of numbers to a dice roll. I should have said, 1,2 ... 3,4 ... 5,6. Instead I said .. 1,2, 2,3 .. ah, 2, 3 ... ahhhhh ... This is known by my friends as the day I couldn't count to three, although that is a slight misnomer.

Vision: During my Honours thesis defense, my vision tunnelled. I could only see what was directly in front of me, a spot too small to see a whole face. The rest of the room was gone. That is what stress can do to me. I also frequently have the problem, especially in the few hours before I need to sleep, that I can see fine (if my eyes aren't blurry) but I can't understand what I am seeing. Whatever it is I don't recognize.

As an anecdote to this, just the other night I saw a movie with Charlize Theron. She is on the very short list of the most beautiful women I have ever seen. I don't recall the movie (damn!) but I do recall that I saw her name on the credits. For the entire movie I was thinking "Damn, she's attractive, who is she?" - I never recognized her. This has happened before, I just don't recall the details.

Conversations - this is a biggie, so I will write it then post, then write part 2.

I frequently can't handle conversations. There is nobody home to reply to what people are saying. Several years ago, and especially last Christmas, I realized that I had been employing a strategy to cope for decades, and never realized it. I rehearse conversations. When I am feeling ok, or waiting for my favourite TV show to start, or cooking, or something else, I rehearse conversations. I have thousands of bits of them in my head - these are ideas, not events. When I am in a conversation, I respond with a blend of the most suitable rehearsed conversations, but as I get more tired I select them more poorly. Every now and again I pick a reply that is total nonsense. This is because I pick the most suitable reply if I can, but when I rehearsed it the circumstances, the actual situation, was different. If it was different enough, then my reply is gibberish. Some people look at me as if I am crazy at this point ...

By the way, the rehearsed conversation about my rehearsing conversations I have used several times in conversation to explain to friends. They still don't really understand why I can go from animated responses to wooden ones.

Now for part 2... I am going to have to take a break for a while, so I doubt I will post before page 5 if this thread continues to grow.

Bye,
Alex

 

[voner]

George:

Your description sounds quite a bit like me. Amazingly close in many ways.

One thing I find curious is that I cannot visualize anything. I have searched the Internet for this and talked to numerous medical doctors about it, and also talked to experts in the world of "graded motor imagery" – an Australian initiated technique used to reduce pain.. -- I have gotten nowhere on digging up technical/medical research information on the lack of visualization thing. There are a lot of people out there like this, not only ME/cfs people. I keep warning to research it further -- but then my attention wanders off to something else!!

Interesting some of my past friends have commented on my "different sense of time".. and I am famous for wandering around aimlessly from one task to another to another aimlessly - I am constantly finding myself in the garden doing six different things than I originally came out to do (if I have energy).

I also have "touch" pain -- technically described as "allodynia" - neurologic pain. Really painful to type or handwrite toward use my hands or arms for anything. I use voice dictation and I tend not to post much – but your posts are so interesting to me every once while I just have to respond. I know this might be controversial to say -- but these Australians who are far ahead in their thinking, consider pain to the “in the brain"… thus another brain problem

The attention deficit disorder – like symptoms.. in the brain. I highly suggest everybody who's interested in the brain and attention deficit disorders etc. watch the video by Dr. Wood at the OFFER conference:

http://www.offerutah.org/ProviderConference.htm

he shows pictures and discusses the attention deficit disorder –like- symptoms and the relation this to low levels of dopamine in fibromyalgia patients. He has great brain functional MRI images and shows the areas of the brain that anomalous in fibromyalgia patients and how they relate to the commonly described brain and other symptoms.

In my opinion and in most researchers there's not a hell lot of difference between fibromyalgia and chronic fatigue -- at least symptomatically -- just different degrees of pain/fatigue/malaise/neuro- immune system problems.

I found Dr. Woods presentation quite enlightening. I also love the fact that whoever runs the website for the OFFER group allows you to download their videos. This helps me greatly because I can download them put them into a video format that I can plug into my DVD player and watch on my TV. Much less painful for me than using the computer.

And for a little humor -- if you watch the video of Dr. Wood's presentation for medical providers … I think that's the one…… anyway in one of his videos act the OFFER conference he says something like this: I tell my patients that us medical doctors can do three things:

1. talk to you
2. Refer you
3. Cut you
4. poison you

At least the man has a sense a humor! He also says he was an English major -- and it is my impression that must help him as a doctor, because I think that he must believe in the power of story -- and therefore listens to his patients closely, because the patient stories matter.


Enuf. Wooof!

 

[George]

Wow, I agree Alex this thread is amazing so far and we still have to hear from Otis since he got us started on this too. (grins)

I'd love to blame the farting problems on brain dysfunction wciarci but I don't think anybody else would buy into to it. (grins) I want to thank you so much however for the phone tip. I've been wondering why the refrigerator was ringing I thought it was some kind of alarm. (grins) Not really but that is soooo ME/CFS.

Hey ya Camas hugs back to you to, NADH, huh, I've been doing the Aceital L Carnaitine route have to look into the NADH any info you have on that could be useful as we look at what things we can use to help now and what things we can push for in research.

Esther12 how long have you been ill for like a few years or a few decades??? You always seem to take things as they come and roll with the flow. That's a good way to deal with this illness, probably the only way. (grins) I have the following writen on the mirror in the bathroom. Acknowledge, Accept, Adapt.

marco those are really good points that I think are vital to this discussion. Some days I have that "touch" pain where the least thing hurts like crazy and yeah it's "in our head" in the respect that whatever is causing this (most likely the protein produced by XMRV) seems to effect a variety of brain parts including those that affect our personality response, our anxiety response, how we perceive pain, visual stimulus, sound stimulus and like Ness mentioned even our ability to read and comprehend. Pretty major life changing stuff.

What's cool though is that we are still um, here. I'm not sure what words to use but there is this hereness about all of us that just doesn't go away even in all the mess. The other good thing is that it seems to be a roller coaster ride. Some days the cognitive dysfunction is worse than others. Dr. Karmoff pointed out the other day in his presentation that "brain lesion" sometimes visible on SPECT scans tend to move around. The damage that we experience during a "Flare(?)" comes and goes. Some of the coming and going for the chicks I'm betting is hormonal and some of the coming and going of symptoms is what doing to much, stressors, diet, weather, chemical sensitivities????? What do you guys think?

 

[pamb]

A big thanks for this thread. It is SO wonderful to hear/read we (sick hubby and I) are not so alone with this. I've laughed out loud more than once reading something, 'cause it all sounds so familiar.

I forgot to include the time thing. John used to simply be able to tell how much time had passed, always, without a watch. Now most days he has no idea if 15 min or 2 hrs have gone by.

 

[Glynis Steele]

Hi everyone,

I hope it's ok for me to put this on this thread, but some of your symptoms here are very similar to d-lactic acidosis. I have read through the symptoms section on this forum, and found other symptoms that may be attributed to dla, and I am wondering whether a poll would be a good idea, so that a list of dla and CFS symptoms could be compared.

For example, I have found threads on dizziness, headaches, breathing problems (hyperventilation), jaw problems such as clenching teeth (bruxism) and many others which can also occur in dla. As the de Meirleir suggests a link between the 2 conditions, I wonder how many people have dla symptoms.

Alex, You mentioned that you have had both slurred speech and a loss of speech, both of which are dla symptoms, please see the link below where slurred speech and dysarthria is mentioned.

Lucy, you mention a change in gait, this can be seen in the 2nd link, together with other dla symptoms.

Gait problems have been mentioned on this thread, and on other threads, the feeling of being drunk, again both seen in dla. This paper mentions a few symptoms of dla.

http://www.amc.edu/academic/gme/programs/Gastroenterology/documents/wang_crohns.pdf

This paper has a list of dla symptoms, which sounds like a lot of CFS symptoms, eg impaired conscious level, ataxia/gait disturbance, slurred speech, hyperventilation, weakness, headache and inability to concentrate.

http://hkjpaed.org/details.asp?id=577&show=1234

If anyone is interested, I wrote a thread on the Research section about dla, how it does not show up in regular testing etc.

Hope this is helpful.

Glynis

 

[George]

Hey Glynis
That's part of the difficulties that ME/CFS faces, symptoms overlap a variety of other illness and problems. For me just sticking, for a while, with just looking at the neurological part of ME is kinda important. (grins) There is a really nice thread on DLA already ( didn't you start that one?) and another on ME/CFS mis diagnosis. For now we are corralling all the symptoms, then try to look at some testing possibilities, what supplements work and don't. Is it different for different folks? Kind of a wide approach. Then talk about more specifics. I think that's more than enough for my cognitively dysfunctional brain to handle for now. (grins)

However (big grins) if folks prefer to talk about it now that's totally cool too.

 

[alex3619]

cognitive dysfunction part 2

Hi again, I guess I get to sneak in and reply earlier than I thought. Continuing my earlier post:

Time: a number of people have complained about time. These are just some of my thoughts. I have very poor timesense on a good day, none on a bad day. This could easily make fixing memories a problem - they are there but have no time stamp! I used to not only be able to tell the time, but say to myself, "ok, I'll wake up at 5:20 am" and did so, to the minute. Now without an alarm I have no chance - and even with an alarm only a foot from my head I still don't have much of a chance unless I am half awake.

I have also lost track of many movies and TV shows. I see the beginning, I see the end, what happened in the middle? Some of this might be memory problems, that is what I used to think, but I now have an alternative idea: sometimes something happens and I process it for some minutes. When I am processing, I completely lose touch with the current events on the movie, I am too busy processing what just happened. This is possibly an attention problem, not just about memory.

Multitasking: I can't multitask. If I get distracted and start something else, then the first thing is gone. This is worse when I am tired or crashing. When I was a student I could discuss/debate/explain almost anything - but change topics and I was lost for several minutes until my brain started working again.

Sensitivity: I have neuropathy but a lot of the "touch pain" is something else. I get it, if I recall correctly, at the same times I become sensitive to noise. It is usually when I am concentrating. All my attention is focussed on something, or I am trying to do so and failing, and I become hypersensitive. A friend of mine once slapped me on the back as a way of greeting. I suppressed my reaction, which is good, because my instinct was to knock his head off. That light slap was like him hitting me with a baseball bat. If I'ld had a gun, and lost control, I'ld probably have shot him before I realized what was happening. That is the severity of the reaction.

Physical coordination: when I am tired I have trouble walking. I tend to stagger, walk into things, kick my toes against things, smash cups and plates and so on. I call this the "staggering stage" and it is a sign I need to sleep (remember the movie "Yellowbeard" - not quite that bad). I also sometimes have trouble walking autonomously, I have to control my arms and legs, which makes me walk very stiffly I am sure.

Good brain times: the last brief respite I had from my ME or CFS was in 2001. My brain function returned. For those of you who like Science Fiction, I felt like Brennan when he woke up as a Protector (Larry Niven). My brain started working, and all of a sudden it was "why have I been so stupid" and then I looked around and realized that everyone, the top 1% of students in the state, were also so stupid (with a few exceptions). I could do things, mentally, that reminded me of idiot savants, except this was every mental function. This was followed by a very "Flowers for Algenon" period a few hours later as my mind disappeared. I could feel my mind slipping away, and I recall I was very not happy about this. This was not any kind of hyper state, I felt no compulsion to do anything, in fact I was very calm the whole time.

Another anecdote on memory: ever made spaghetti bolognase and forgot to add any tomato? I did recently. Forgetting key ingredients I do all the time, and then I wonder why it doesn't taste right.

CAT scan: I had a functional cat scan once with my brain loaded with radioactive glucose. The result, at a time when I was relatively calm and relaxed: I had below normal brain activity, and my parietal lobe (if I recall right) was substantially below normal. I can't grab the records to check, because I have twice now, while moving house, thrown out all my medical records. I get into rubbish throwing mode, my brain is not censoring anything, and everything that looks like it even might be rubbish is thrown. Very bad, I now have no medical records establishing my disability.

A good thing: very bad memory is not entirely a bad thing. I know I have had many years when life was hell. I just don't remember much of it. This probably protects us from PTSD - if I remembered all the stuff I have lived through, a sharp kitchen knife would probably start looking like my best friend. So there is a silver lining to this: we forget what few good things happen in our lives, but we also tend to forget all the bad things, so we really only have to cope with the bad things happening now.

If I think of more, I'll post part 3.

Bye
Alex

PS Duhhhh, the most important cognitive dysfunction, if you can call it cognitive (brain/neurological anyway): I have major circadian sleep problems, on the verge of not having any kind of day/night cycle at all. This would also play havoc with my time sense - morning, night, evening, day, night: meaningless terms.

 

[George]

Beautifully written Alex, you shined a light into corners that I had forgotten were even corners. It's making me really wrestle with just how much cognitive dyfuntion there is in a really honest way.

 

[alex3619]

Hi George, I appreciate the kind words, and hope I have helped. i try to be as clear as i can because this is already too murky a topic for all of us. Bye, Alex

 

[*GG*]

Milking Bees? well that's interesting.

.

Boobees

GG

 

[*GG*]

I thought I had seen mentioned recently that if you want to document your Cognitive Dysfunction, then you should see a NeuroPhsychologist? I believe someone asked about this?

GG

 

[3CFIDS@ourhouse]

What part of my brain is missing? The part that remembers things I am looking for something I read today on one of the forums about how MLVs affect the brains of mice. Judy Mikovits was describing what happens. Can anyone point me in the right direction?

The cognitive dysfunction has been pretty well documented here , but one aspect of terrible memory I haven't seen mentioned is that now I not only forget things, but sometimes I think I remember something that didn't happen, or think I said or did something I didn't. I could be one of those people who confess to a crime I didn't commit! We often describe our brain issues as "fog", but for me, it feels more like tremendous brain strain, as if I'm taking an impossibly long, timed standardized test where I don't know half the answers and am getting further behind. And I mean just doing simple things. This is the part that scares me- losing my brain.

 

[sela]

voner, there was a new yorker article by that famous neurologist (what's his name?) about ( what was it?) but in any case he talked about not being able to visualize. he has it, functions normally, it's a genetic thing. i have it too, i was happy to read about myself. i am sure you can find this, esp. if you remember who this doctor is. he wrote " a man who called his wife a hat". great great book too. sacks!! oliver sacks! yea!!!!!

 

[Marco]

Hi again, I guess I get to sneak in and reply earlier than I thought. Continuing my earlier post:


Physical coordination: when I am tired I have trouble walking. I tend to stagger, walk into things, kick my toes against things, smash cups and plates and so on. I call this the "staggering stage" and it is a sign I need to sleep (remember the movie "Yellowbeard" - not quite that bad). I also sometimes have trouble walking autonomously, I have to control my arms and legs, which makes me walk very stiffly I am sure.

Thank you Alex

That's the one aspect of physical co-ordination I experience during a flare/crash that I forgot to mention and is probably the most important.

I feel I literally have to will each limb to move and am never sure where its going to land with the result that I have to watch my feet. Everything is slow and robotic - not at all like normal movement where a lot of your physical movements use gravity if you know what I mean. Probably not.:Retro smile:

Normally, when say walking or reaching, you initiate a move and the limb swings smoothly and easily into place with no effort - like a pendulum if you like. The only conscious effort is at the start of the movement (willing it!) and then end - e.g. grabbing a cup - where you have to fine tune the movement to suit the object.

During a flare, the full range of the movement has to be willed and more complex tasks like holding a cup take an inordinate amount of concentration. Its as if the normal movements that are usually automatic and internalised (known in psychology as motor programmes) are lost and you're starting to learn to move from scratch.

Anyway that's my take on it and thanks again.

 

[George]

Boobees

GG

LOL GG, of course Otis's avatar. (evil grins) Thanks I needed that.

I thought I had seen mentioned recently that if you want to document your Cognitive Dysfunction, then you should see a NeuroPhsychologist? I believe someone asked about this?

At the CFSAC meeting they had a presentation on it. When I had my Disability evaluation here in Texas they had a Phsycholgist give me a very short batter of test (1 hour) The tests were interwoven into basic conversation and kicked my ass. I cried through most of it. He would asked me about what I did for a living and then ask me to remember 5 words. Like Train, tea, green, house, gum. Then go on to ask me about my social life and then come back and ask me to repeat the words in the correct order. EEEEEKKKKKK!

Some other ones interspersed in the conversation were like counting backwards from 100 by 3's (couldn't do it)
Remembering a short rhyme.
Filling in matching pairs of words like dry is to towel like, wet is to _________ ( I seriously cried during those cause they made my brain hurt to think that hard)
And then putting in the correct word in a sentence. (bleh!)

This was back when I first got ill and I was absolutely brain dead for the first 2 months. I would be washing the dishes and my brain would start to buzz, no "thoughts" you know? The brain is always thoughting and to have it turn into TV white noise was well I don't really remember, (grins) cause when I would come around I'd be sitting on the floor or laying on the floor or couch or in a chair and once the bed, with no memory how I got there. And it's like the brain came back on line a little at a time. I remember the word "candle" and then thinking "huh, what candle, what?" and then realizing I was back on line so to speak.

It scared me so bad that I learned how to pace in two easy steps, feel funny = lay down NOW! (grins)

 

[OverTheHills]

Earth to Brain, come in please....

Just wanted to say something encouraging here.

My ME has a strong seasonal pattern (allergies I suspect) and I've noticed that my cognitive function varies as well so I believe this symptom should be largely reversible once we have a treatment. Obviously we won't get back memories from the lost years but, like others, I think thats mainly a good thing. Improved cognitive function doesn't automatically go with improved ME - I can be in a good patch and have terrible noun deficiency - so maybe the brain takes a while to heal.

My sympathies to those with more severe cog dys - mine is quite mild (problems multi-tasking, crap short term memory, noun deficiency) but still puts many limits on me.

When I first got ME I had terrible problems with dropping stuff. It was like my brain would just forget to send the signals to keep holding on to the peice of paper or the coffee cup after a while. I think it was a multitasking thing - if I started concentrating on something ,or walked across the room there wasn't enough bandwidth for both. Don't really get that anymore, perhaps BRAIN has learned to compensate somehow.

OTH