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Can you have ME or CFS without cognitive dysfuction?

Discussion in 'Cognition' started by jonnyboy, Dec 6, 2011.

  1. svetoslav80

    svetoslav80 Senior Member

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    I don't know if you have CFS but you're so lucky not having brain fog. I have brain fog with almost any disorder I get. Be it flu, gastritis, prostatitis - the pain is not so much of a problem than the brain fog I'm getting with these disorders.
     
  2. Graham

    Graham Senior Moment

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    Thanks for the thought, Calathea. I guess APD is a brain-processing problem, but alongside that, I had a hearing problem at a specific high frequency (around 6.2kHz), and a hearing aid has certainly helped a lot. I can almost feel my brain struggling to interpret stuff at times, so I'll follow up your suggestion with interest. Actually what you said about having it throughout your life rings a bell with me as well (just not at 6.2kHz).

    It's more than just that for me though, because the challenge (and fun) of explaining a mathematical process to someone who is struggling, is trying to find analogies or structures that build on their current understanding - it's a bit like doing a cryptic crossword. That's where the "parallel processing" comes in. I still enjoy doing it, but now only in short bursts. I've gone from full-time teaching to doing 3 hours of well-spaced private tuition a week.
     
  3. ahimsa

    ahimsa Senior Member

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    This is a very late response but I hope it will be of some use for the original poster (jonnyboy) and others.

    During my first couple of years with this illness I had hardly any cognitive problems. My problems were all physical - dizziness, nausea, increased heart rate, trouble with heat, muscle twitching, exhaustion after very little exertion, and so on. It took 5 years before I got a diagnosis of Orthostatic Intolerance (NMH in my case, not POTS). I may have had some problems with foggy thinking and forgetfulness but I assumed it was because I was so exhausted.

    When I partially recovered, and was able to return to work (software engineer at a large firm), I was able to write software, write specifications, attend meetings, and do all my other tasks without much problem. I would come home and collapse, and I'd spend the whole weekend resting, but as far as I could tell it was exhaustion due to physical exertion and not from mental work. And then later I realized that part of the problem was the NMH and that even just sitting upright at a desk for long periods can be exhausting (need to have my feet up). However, if you had asked me then whether I had any cognitive problems I would have said, "No, absolutely not." Then gradually I began to notice changes.

    First, I had trouble with nouns. But not with every noun, just with concrete items. I never had any problem with words like algorithm or schedule. I used to joke that while I was having aphasia I never had trouble with the word aphasia. (I learned later that's not quite the right term, it was more anomia)

    Anyway, I would say things like, "Hand me the, um, um, that thing on the table, square, black, has data on it ... DISK! Yeah, please hand me the disk." If it was some concrete item that I could picture in my mind then it might get turned into a guessing game in mid-sentence. I would be absolutely sure that I knew what I was going to say and suddenly my mind would go blank. Fortunately, this type of thing happened infrequently, and it was easy to pass off as a joke, so it didn't interfere with my work.

    Second, I had trouble staying on task. If I got interrupted I would completely forget what I was doing. This was a completely new experience because I was always very good at being focused. After I finally figured out this was a new problem I used to joke that I suddenly had a stack depth of one, really more of a register than a stack (jokes for my fellow computer nerds). I learned pretty quickly that I needed to keep a written "to do" list with me at all times so I'd know what I was doing in case of interruptions (e.g., phone calls). Fortunately, I worked in a small cubicle where there was generally some visual clue (either my computer screen or my "to do" list) to jog my memory.

    Third, I had a lot more trouble learning new things. I could easily write program in languages that I had already learned before I got sick. But learning new languages was suddenly a lot harder. I was only 29 when I first got sick, and in my early 30s when I first noticed this problem, so this was clearly not an age issue.

    Now, after 20+ years of illness, I have a lot more cognitive problems than when I first got sick. However, I'm nowhere near as bad as people who say that they can't even think well enough to read a book. My cognitive problems are worse when standing, or during a "crash." My problems can be reduced if I manage to get complete rest for a few days in a row and then get a really good night of sleep (very rare).

    I also wonder at times whether all my problems could be due to my NMH. I do fit the CCC criteria for ME/CFS (and I think the ICC criteria, too) so I guess that's not true. And I definitely have PEM/PENE (or whatever you want to call it). But the whole situation is still a bit confusing for me.

    Well, there's one more data point for you. I'm not sure whether it completely answers the question but I hope it was helpful! If I left out something feel free to ask.
     
  4. Mark

    Mark Acting CEO

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    Here's some interesting research which may represent the beginnings of an explanation of why some people are 'missing symptoms' from the overall pattern of ME...

    http://forums.phoenixrising.me/showthread.php?15715

    So it may be that some of us have genetic predispositions that either protect us or make us more vulnerable to neurological symptoms, fatigue, or mood disturbance. Something along these lines may eventually explain the 'subsets' in the spectrum of symptoms.
     
    L'engle likes this.
  5. jimells

    jimells Senior Member

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    mark, I'll have to take your word that the research is interesting ... I recognized a few words in that quote, not many :D

    My current physician is leaning towards 'dysautonomia' as the root of all my problems (I seem to have POTS, as well as many other symptoms). But as far as I can understand it, 'dysautonomia' is a rather vague diagnosis that really doesn't tell us much. And I definitely have the PEM thing big time - it's my worst problem, and it triggers both the POTS stuff and migraines, as well as feeling like I've been hit by a bus.

    Am I correct in thinking that a decent neurologist should be able to sort this stuff out?
     
  6. ahimsa

    ahimsa Senior Member

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    That has not been my experience with neurologists but that experience was many years ago, in the early to mid 1990s.

    I saw a couple of different neurologists during my first 3-4 years of illness. Both of them were sympathetic to my problems (e.g., no disbelief that I was really ill), and they were helpful in ruling out other problems, but neither of them were able to provide a diagnosis of any kind.

    I don't know what type of specialist one would see for autonomic dysfunction. I'm seeing a cardiologist now. He was able to do my tilt table test (he used roughly the same test protocol as the first Johns Hopkins study) and is managing my medications. But he has often said that he knows only a little bit about this and if I want to go into it more deeply then I'd need to travel to see a doctor who specializes in this area.

    I don't know the title or specialty name for the type of doctor that treats autonomic problems. Perhaps it is a sub-specialty of cardiology? or neurology? The list of doctors at NDRF (http://www.ndrf.org/physicia.htm) seems to have several different types of doctors listed.

    Good luck with finding a doctor and treatment!
     
  7. Graham

    Graham Senior Moment

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    Hi Ahisma, I recognise your description of your cognitive difficulties. Mine pretty much fit that pattern. I also find difficulties in remembering lots of factors in making decisions (such as choosing house insurance when each of them has different conditions and - dammit - forgotten the word - the amount you have to pay first towards any repayment!).
     

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