# Cognitive Dysfunction Trouble - rant



## Clair (Sep 16, 2000)

I don't know why but I feel as if the cognitive dysfunction I get with my M.E. is getting worse over time - maybe it just feels that way but I feel like a mere shell of my once intelligent self







My endocrinologist says I am doing all the correct things in terms of giving myself the best chance to recover from the M.E. so I can't understand why my cognitive skills continue or appear to get worse.This week for example, on one of my driving lessons I had a period of about 10 seconds where I just couldn't remember or think what to do in something as simple as driving round a corner and my instructor had to take over.Then last night in the pub, I had really bad trouble understanding anything anyone said to me, the customers there like to try to wind me up and kept saying stuff and looking at me for a response and I just had no idea what they were talking about. I know most of them despite knowing I have M.E. have no idea that most of what they say goes completely over my head so they think that they are suceeding in upsetting me when in fact I'm frowning at them coz I have no idea what the fools are saying







I'm also noticing my ability to remember how to spell words or even forming words properly when I speak is going down hill rapidly...I think for me this is the worst part of my illness to deal with, I feel so isolated from humanity when i can't even understand other people


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## M&M (Jan 20, 2002)

(((hugs))) I know what you mean, I feel the same way. Some days it is impossible! I don't have any advice, but I have plenty of ((hugs)) and understanding!


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## Stillnaked (Jan 19, 2003)

Yup, I am the same. I have noticed that I edit what I type, look for easier to spell words. It's sad, I always liked verbal sparring, and now half the time I can't think of ANY words. My kids get so mad when I have to have them repeat things 5 times. I just don't understand what they are saying. I soften it a bit now by repeating back what it SOUNDS like. The other day I repeated what I heard" Ginger cats eat socks a lot?" And they laughed, at least that way they know I am not ignoring them.Laurie


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## Rowe2 (Sep 26, 2002)

I'm sure glad I am not in this big world alone feeling this way.







I thought for awhile it was because I was getting a "little" older







It is so embarrassing to be talking to someone, and the words will not come out. Do you'll take medications? I sometimes wonder if this is the reason. But...I'd rather be searching for words than a bathroom at the last moment.


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## Guest (May 21, 2003)

I can definitely relate, Clair. Some days I almost have to bite myself to pull myself out of the fog. I think maybe the difference in me a few years ago and me now... is that I've learned not to beat myself up when I mess up ... especially at work. There are times when I draw a total blank during training, and when that happens I don't get anxious or upset anymore.... Instead, I joke about it.... often eliciting jolly responses from my students in the process... and all the laughter serves to help us all feel happier inside.I think what helps the most is focusing on what I CAN do, rather than what I can't do.... because if I think about what I can't do anymore, it makes me want to give up..... so I force myself... literally.... to think well of myself... and somehow that translates into better physical health despite all the pain and fatigue.Take care,







Evie


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## trbell (Nov 1, 2000)

could be some depression?tom


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## Paige (Apr 4, 2002)

I always caution anyone that is experiencing a loss of cognitive ability to have their B12 levels tested. B12 deficiency can cause irreversible neurological damage. The symptoms are memory problems, major cognitive problems, tingling and numbness in the extremities, burning sensation/sore tongue, overwhelming fatigue.Yes I know it sounds a lot like fibro and CFS, but trust me, I've been dealing with it for several years and if I miss an injection by 2 days or more, my symptoms come on like a freight train.You can have a B12 deficiency if you don't eat a lot of red meat and dairy, if you are a vegetarian, if you have stomach problems (IBS), if you have had stomach surgery, or sometimes it is genetic. If you do not have the ability to absorb the B12 in the food you eat, vitamins will not work either - you have to have injections for life.You can literally die or become severely retarded due to lack of B12. I was lucky to only have neurological damage in four areas of my brain. Have your B12 checked at least twice a year!If you are not deficient, the B vitamins will give you an energy boost and they are good for the fibro fog feeling.


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## Guest (May 22, 2003)

That might explain why I crave red meat even though it supposedly isn't good for us?I was deficient in B12 for years due to gynecological health problems.I give my body what it asks for... on multiple levels.But it looks as if I am doomed? I have all the issues you referenced, Paige.Evie


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## katjam (Jun 5, 2003)

Lately I've had a lot of problems concentrating, which is not good for my profession- I'm a writer. At times it seems like it takes me forever to process information, and I'm very distracted. I'm trying to lose weight and lower my cholesterol, so I've cut waaaay down on dairy and meat. Should I take a multivitamin, or just a B vitamin (do they even sell those?) I'm taking 1200 mg of calcium with vitD everyday, I don't want to overload on the vitamins.Sometimes I feel like I'm a walking pharamacy, between the medications and the vitamins.


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## trbell (Nov 1, 2000)

If people are concerned about cognitive problems they might want to consult with someone who knows this area, like a psychologist.tom


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## Susan Purry (Nov 6, 2001)

Tom, could you explain how a psychologist can help someone with cognitive dysfunction, which is a symptom of ME/CFS in its own right rather than being due to depression or other psychological problems?


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## katjam (Jun 5, 2003)

My mental fogs are not from depression. I've been depressed (postnatal depression)and through therapy I've learned to read the signs, and how to deal with the depression. Although I can see how I could get depressed if my mind doesn't clear up.


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## kel1059 (Feb 28, 2003)

My cognitive dysfunction and brain fog was horrible. I had no energy at all and the fatigue was beyond belief. I couldn't even climb stairs or wash a load of clothes without getting severely tired. My arms would go numb when I walked. I had no circulation and I looked like a ghost.I gave up all sugar even fruit and that helped quite a bit with the brain fog, but then I had even less energy. At least it gave me a small clue as to what was partly behind my problem. i suspected that I had a fungal overgrowth and I must have because several symptoms dramatically reduced after about 4 weeks on an aggressive antifungal program.I had read about a Dr in CA that treated CFIDS and fibro patients by eliminating fungal problems and she had some decent success. http://64.41.99.118/charge/pg6.htm I think the vit B12 is a good idea. I have also read that magnesium aspartate/ potasium aspartate is very effective.I completely disagree with trbell and his advice to see a psychologist for the issue of brain fog.


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## bonniei (Jan 25, 2001)

Oh my God I can't believe I found people like me. Yes it is definitely B12 deficiency. When I get deficient I too hear things but don't understand a word. I am supposed to get regular B12 shots but I don't. Just the other day it happened to me. I immediately got my B12 shot and I was fine. I think it is because we suffer from malabsorption of some kind. I am getting the latest celiac test done to see if that is why I have malabsorption of B12.


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## kel1059 (Feb 28, 2003)

I have deeply suspected and wondered about vitamin B12. However, it never seemed to do anything for me. But i am thinking that I need to be consistant with it and really start to pay attention to any possible effects.I started to keep detailed records of everything I take in the way of food, supplements, probiotics, meds and this should help me.


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## bonniei (Jan 25, 2001)

You can get B12 tests done paid for by the insurance. But signs are tingling of limbs, numbness and when the level gets close to zero, this thing about hearing words and not being able to understand them. My husband has to repeat it a few times before I understand


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## M&M (Jan 20, 2002)

Ok, I'll be the odd man out and represent the other side!







I've gotten B12 shots from my doctor to help with my FM/CFS symptoms, and unfortunately they didn't affect me at all. So, I guess we can safely say that some people do have brain fog from a B12 deficiency, while others have brain fog not related to a B12 deficiency.







I'd also agree - Tom, I'd be interested to hear how you propose a psychologist can help with a physiological problem.


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## kel1059 (Feb 28, 2003)

Bonniei,This is really weird because today I took a full 3000mcg B12 and today was a very good day for me. However, it could be due to the nice weather, the high pressure, the 2nd day on Ibsacol, the fact that i had a semi-normal day today regarding bowel function. it could be any reason but i need to be stricter with the B 12.Mrs mason,I think that all these illnesses are so complicated that it is doubtful that 1 thing is going to make a difference. I guess that is why i have been using a complete total all out assault on my illnesses and it seems to be giving me some very good results but it is painfully slow with a lot of setbacks.I think one of the best things i ever did for my health was to chelate the mercury from my system --$75.00 (plus $50 pretest and $50 post test)treatment that lasted 50 days. The shakes, tremors, and confusion on the days that i took the DMSA was pretty nasty. the doctor said that was proof it was coming out. I also think that the shakes and tremors that I have had for a number of years might have been due to the mercury existing in the nervous tissue.


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## bonniei (Jan 25, 2001)

I don't know exactly how one defines brain fog but not understanding words was helped by B12 for me. That was the only symptom I had of brain fog. I agree that it may not help everyone.


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## LHR (Jul 9, 2003)

i remember one time.. i couldn't remember the date.. had to ask for the day and then the month and then the year! i really couldn't remember! .. i think i was probably about 24 at the time.. i believe it was from "allergies" to food.. once i stopped eating certain things i got much better.. Recently they have found that many autistics are helped a great deal by eliminating food they are allergic to.. .. it is amazing the effect that food can have o cognitive function.. si if b12 doesn't work for you try modifying your diet...


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## trbell (Nov 1, 2000)

I hate to say it, but a good psychologist whould be able to give you some test to help pinpoint the problem and even some suggestions on how to handle it.Bada


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## Paige (Apr 4, 2002)

You can also give yourself B12 injections. I do. I take 1000 ml a week which is 4 times the normal dose of 1000 ml a month. Warning! The damage from a B12 deficiency can be permanent. Do not skip your shots!Most doctors won't give you shots unless you are deficient. A simple blood test is all it takes to find out. I had to take the shots for over a year before ANY of the symptoms improved. The most noticeable was the pain in my feet (feeling like you are walking on uneven rocks) and the burning sensation in my mouth. Paige


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## Paige (Apr 4, 2002)

Oh and the psychologist thing...I was sent for a neuro-psych evaluation when the B12 was diagnosed. The psychologist decided I was depressed and that was the cause of all of my problems. (I was already on anti-depressants.) He totally knew nothing about either the B12 pernicious anemina issue or FMS. Even bringing him documentation on the diseases did not sway him. If I would just join ToastMasters (speaking club for those not familiar) all of my problems would go away. Don't even ask - the guy promoted this club everytime I went regardless that I had done speaking engagements in front of hundreds of people with no problem. Not acknowledging the problems but blaming them on depression made me very angry. Even though through his own tests he determined that I had brain damage and despite the fact I also tested way above average on the IQ test and couldn't do simple things, I was merely depressed. After 6 months of "therapy," the neuro-psych test were repeated. I did much worse on them. So much for his theory.


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## Guest (Jul 23, 2003)

B-12 never did anything for my brain fog, nor did a couple of psychologists.I believe the brain fog may be related to Serotonin deficiency in the brain. What do you think about that, Tom?It might also be related to oxygen levels to the brain? Just a guess.Evie


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## Susan Purry (Nov 6, 2001)

Clair, how are you doing with the cognitive dysfunction this week?


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## bonniei (Jan 25, 2001)

Clair I was wondering about you too. Evie, did you have a blood test done? was there a deficiency. I too took megadoses of B12 initially. Shot everyday which I administered to myelf? Vitamin capsules will not work if you have an absorption problem


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## Clair (Sep 16, 2000)

Thanks for asking  the weather here is humid which isn't helping, when it gets like this my arms and legs ache like nothing else







The cognitive dysfunction fluctuates with me, but is mainly related to how much physical activity I do. My endocrinologist was quite concerned about it so he put me through some tests including an MRI to check out some possibilities...I'm just waiting on the results really..Its frustrating because I'm currently trying to pass my theory driving test at the moment, and I dont know if its the ME but I just can't get the hang of the hazard perception tests....so its costing me a small fortune at moment


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## Stedwell (Jan 5, 2003)

I would like to have my B12 checked but Have had so many tests that my docs treat me like i'm the biggest time waster going. I am a vegetarian and suffer from the brain fog thing terribly. Will taking B12 supplements make any difference to me?


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## bonniei (Jan 25, 2001)

Clair I wish you luck in getting through your driving test.Stedwell, if you are a vegetarian, there is a high probability that you may be deficient in B12. The test is very simple and if you are deficient in B12 it can cause all kinds of nervous problems later on so you might as well get it checked out and and take corrective action if needed.


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## Guest (Jul 25, 2003)

Bonniei... before my surgery... I was so anemic that I was passing out.


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## bonniei (Jan 25, 2001)

Evie, are you talking about regular anemia(as in Iron) or pernicious anemia(as in B12) and what corrrective action did you take?


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## Guest (Jul 26, 2003)

Bonniei.... mine was due to excessive menstrual bleeding..... for about 4 years (after I started passing out)... I took megadoses of prescription iron. Finally I had a hysterectomy because I had no choice.Evie


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## bonniei (Jan 25, 2001)

Iron deficiency can cause all kinds of problems as can B12Also have you all had your thyroids checked. That too can cause brain fog according to this Symptoms of thyroid deficiency Symptoms of Pernicious Anemia- i.e B12 deficiency Symptoms of Iron Deficiency


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## Susan Purry (Nov 6, 2001)

Great links Bonnie


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