Neuro-cognitive testing

Discussion in 'Fibromyalgia Main Forum' started by dhcpolwnk, Oct 17, 2002.

  1. dhcpolwnk

    dhcpolwnk New Member

    On Tuesday, I completed a battery of neuro-cognitive tests to see whether my MS, fibromyalgia or anything else was causing my memory and cognitive problems. While I'm pleased that the results showed virtually no impairment, it leaves me wondering why subjectively, I *definitely* feel that my mind isn't as quick as it was and my memory--especially short-term working memory--seems impaired from time to time. The tests showed that my weakest area was immediate recall of a list of words that was read aloud, and that was just slightly below average. It might explain *some* of my memory problems, though.

    Overall, my IQ and general memory both ranked in the "superior" category (around the 95th centile), but I *know* I used to be much faster at some of the tasks I did during the test. The psychologist who did the test conceded that it may not correlate well with real-life situations. For example, for the tests, I was in a quiet room with no distractions. In my daily life, there are *many* distractions, and I often am trying to do two or more things at once. (The psychologist--who really was very nice and seemed pretty knowledgeable--also said they have no test for "multi-tasking," which seems to be one area where I'm having a lot of difficulty.) Also, the psychologist had no baseline to compare the results with. (I guess this test will become the baseline if I need future testing.)

    I have been concerned about these cognitive problems as possible MS damage to my brain, and as I said, I am very glad that the tests didn't show any gross loss of cognitive ability. But meanwhile, I'm still dealing with the symptoms. They seem fairly mild now, but I sure hope the Avonex I expect to be starting soon will prevent it from progressing. It's not that I can't think or reason or anything like that. I'm just slower at it, and it takes a lot more energy.

    Could some of what I'm experiencing be related to fibrofog? I suspect a lot of it may be related to inadequate sleep, but I'm still trying to figure out how to handle that one.

    Has anybody else had a neuro-cognitive workup? What did you think (a) of the process and (b) of the conclusions? If you had some cognitive loss, what kind of help were you get for it?

    --Laura R.M.

    P.S. One thing that reassured me is that apparently, the area where my memory is weak is very different from the kind of memory loss experienced by Alzheimer's and other dementia patients. At this point, the memory thing is more of a nuisance than anything, but it would be a real problem if I were working at a traditional 9-5 kind of job.

    [This Message was Edited on 10/17/2002]
  2. dhcpolwnk

    dhcpolwnk New Member

    On Tuesday, I completed a battery of neuro-cognitive tests to see whether my MS, fibromyalgia or anything else was causing my memory and cognitive problems. While I'm pleased that the results showed virtually no impairment, it leaves me wondering why subjectively, I *definitely* feel that my mind isn't as quick as it was and my memory--especially short-term working memory--seems impaired from time to time. The tests showed that my weakest area was immediate recall of a list of words that was read aloud, and that was just slightly below average. It might explain *some* of my memory problems, though.

    Overall, my IQ and general memory both ranked in the "superior" category (around the 95th centile), but I *know* I used to be much faster at some of the tasks I did during the test. The psychologist who did the test conceded that it may not correlate well with real-life situations. For example, for the tests, I was in a quiet room with no distractions. In my daily life, there are *many* distractions, and I often am trying to do two or more things at once. (The psychologist--who really was very nice and seemed pretty knowledgeable--also said they have no test for "multi-tasking," which seems to be one area where I'm having a lot of difficulty.) Also, the psychologist had no baseline to compare the results with. (I guess this test will become the baseline if I need future testing.)

    I have been concerned about these cognitive problems as possible MS damage to my brain, and as I said, I am very glad that the tests didn't show any gross loss of cognitive ability. But meanwhile, I'm still dealing with the symptoms. They seem fairly mild now, but I sure hope the Avonex I expect to be starting soon will prevent it from progressing. It's not that I can't think or reason or anything like that. I'm just slower at it, and it takes a lot more energy.

    Could some of what I'm experiencing be related to fibrofog? I suspect a lot of it may be related to inadequate sleep, but I'm still trying to figure out how to handle that one.

    Has anybody else had a neuro-cognitive workup? What did you think (a) of the process and (b) of the conclusions? If you had some cognitive loss, what kind of help were you get for it?

    --Laura R.M.

    P.S. One thing that reassured me is that apparently, the area where my memory is weak is very different from the kind of memory loss experienced by Alzheimer's and other dementia patients. At this point, the memory thing is more of a nuisance than anything, but it would be a real problem if I were working at a traditional 9-5 kind of job.

    [This Message was Edited on 10/17/2002]
  3. teach6

    teach6 New Member

    I've had the testing done, twice! Each person did it differently. The first time I went to a psychologist recommeneded by my disability attorney. He was very familiar with CFS and the quirks that go with it. He told me when I finished that I had done well where I should have and poorly where I should have.

    The second one was done by a psychiatrist and paid for by the state disability retirement system. As a teacher my retirement is through the state. I really haven't finished this yet because he gave me a personality inventory to take home and complete. I only have a few good hours each day when I feel competent to complete something as detailed as this so I haven't finished it.

    As for your MS, I have a very dear friend who is bed-ridden with MS. She only has the partial use of one hand. However her mind is still as sharp as ever. Last summer I went into a long explanation about my family, which is quite confusing. This was at her request because she wanted to know more about it. She remembered it all down to the last detail, and for quite a while. I haven't mentioned it recently, but one thing she has is her memory and her sense of humor.

    She makes calls for the MS Society and was named volunteer of the year a year or two ago. She goes way above and beyong and always gets the tough cases.

    I mention her so you can see that even if you do lose a lot from MS it doesn't mean you will lose your memory.

    Barbara
  4. vloga

    vloga New Member

    Hi Laura. Your message helped me - I feel the same as you, and keep losing words. Sometimes I can write them but not say them, sometimes I have problems even writing them. Some days I'm just totally out of it. Not had the workup - here in the UK, you don't get worked-up, only worked up over how inefficient and unhelpful the NHS is.

    Could you explain how the memory loss differs from that in Alzheimer's please ? Cos I was wondering whether that was what it was. It seems that my memory has got much poorer over the last year or so.

    Thanks

    Vloga
  5. teach6

    teach6 New Member

    But I also have memory problems. I have both CFS and FM. I have difficulty remembering names and words that I use every day. In addition I often mix up numbers and they come out all messed up. I have been known to have to dial a phone number three or more times before getting it correct.

    I have short term memory problems, more than long term memory. I also have difficulty with reading comprehension. I sometimes have to reread a section of written work several times before completely understanding it.

    I find that the more fatigued I am the worse my memory is. I hope this helps until Laura comes along.

    Barbara
  6. dhcpolwnk

    dhcpolwnk New Member

    You asked: "Could you explain how the memory loss differs from that in Alzheimer's please ? Cos I was wondering whether that was what it was. It seems that my memory has got much poorer over the last year or so."

    The psychologist who gave me the tests said that although my immediate recall of words read orally was a bit below average, when he repeated the test later, my results improved. (He did this twice, and I remembered more each time.) He said with dementia, Alzheimer's included), the immediate recall is usually better than the delayed recall--although immediate recall may not be great either.

    --Laura
  7. dhcpolwnk

    dhcpolwnk New Member

    Thanks for your response. I've lived with MS for a long time, and I'm long past catastrophizing about it, including about cognitive loss. I've been an MS peer counselor (for 10 years), and I worked for the California chapters for 10 years as Government Issues Coordinator for the Multiple Sclerosis California Action Network, an advocacy coalition that I created. However, I *have* been having cognitive problems, and the docs have told me the location of my MS lesions is consistent with MS cognitive problems. Believe me, I'm not looking for any problems, and I would be delighted if it turned out that my problems were the result of poor sleep or FM and are reversible (or at least not progressive). But I don't want to take any chances. Recent research shows that untreated MS can result in brain atrophy, and my last MRI actually showed a little of that. That's why I'm going to be starting on Avonex, one of the new MS drugs. (Well, I guess it isn't all that new anymore.)

    I am reassured to hear about your friend's mental acuity, however. Why is she "bedridden," by the way? Most people with MS--even those with very severe symptoms--can be up and around in a wheelchair, either with someone to help push them and/or with a power wheelchair. (Some can be operated with chin controls or straw-like "puff" controllers.) I just hate to think of somebody with MS--especially someone with a sharp mind--who is stuck in bed when a whole world is still out there!

    --Laura R.M.

  8. toots2

    toots2 New Member

    Your letter sounded like it could have been written by me. Same symptoms, same concerns. Losing words and not being able to complete tasks as quickly as I use to definitely had me worried. It is good to see there are those of you going through this too. I read we have slow blood flow to the brain but no my cognitive problems ae worse when I'm tired. I use to be able to whip up a dinner for 12 in no time flat. Now, I it takes me several minutes to remember what I am needing out of the refrigerator and pantry. Thank God I am retired. Don't think I could do the work thing with my mind like this. Suzanne
  9. toots2

    toots2 New Member

    And I also thought I might have MS as my best friend has it and her mind is much worse than mine. Deterioration of the myelin sheath in the brain of MS patients can bring on severe cognitive problems. I no longer worry about that as I have no numbness nor problems with my eyes. Suzanne
  10. dhcpolwnk

    dhcpolwnk New Member

    You said: <Deterioration of the myelin sheath in the brain of MS patients can bring on severe cognitive problems. I no longer worry about that as I have no numbness nor problems with my eyes.>

    It's certainly true that MS *can* result in severe cognitive problems, but I don't want people to get the wrong impression. *Most* MS cognitive problems tend to be fairly mild, and from what I've read, the short-term memory and multi-tasking problems that I seem to have are fairly common. A woman in the first couples support group I co-led as a peer counselor had much worse cognitive problems, however. So I guess I'm just acutely aware of the possibility--and I *don't* want it to happen to me! So wish me luck on the Avonex, which I hope to start soon. It's supposed to help with a lot of things, including progression of cognitive symptoms.

    --Laura R.M.
  11. teach6

    teach6 New Member

    My friend is bedridden because she has had to have surgery to remove both of her hip joints. Her husband travels frequently in his work so when he is gone she's in bed 24/7. She does have a woman who comes in and assists her with meals, and other things when he's gone.

    When he's home she goes out sometimes, but is finding that she becomes tired more and more easily from things like going to church and out to lunch afterwards.

    She uses a head rest so she doesn't use extra energy holding her head up. She frequently asks someone nearby to put her left arm back up where it belongs (in her lap) when it has fallen. She used to be able to use the other arm to do it, but not any more.

    She has difficulty feeding herself now and when we are out together her husband always feeds her. She has the type of MS that is continual, without remissions. She was dx'd 21 years ago and I've known her for 20 of them.

    When I first met her I always thought she and her husband looked so cute because she always walked holding his arm. A couple of years later they began attending our church and by then she was using a three-pronged cane for assistance. It was at this time that we became friends.

    I've watched her lose her ability to drive, most of her eyesight, and just about everything else. But she did get to attend her daughter's college graduation, which was a day made just for her. It was cool and cloudy, so she managed to sit through the entire ceremony.

    She thoroughly enjoyed it and slept all the way home from NYC to the DC suburbs. They had front row seats, but I had aisle seats so I could get good photos. One of my sons attended the same art school.

    I've probably told you more than you wanted to know.

    Barbara

  12. sofy

    sofy New Member

    I am scheduled for my first visit for cognitive testing on Monday. I too have thought about ms but recently had a lumbar puncture and my fluid was nice and clear so they tell me that means I dont have to worry. Any comments or info on this puzzle piece? Next month will be having more mri and egg of the old bean. There seems to be no end to these body invasions. Lets just hope it leads to retreival of my senses because a mind is an awful thing to loose.