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Edinburgh cognitive and behavioural ALS screen

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    Edinburgh cognitive and behavioural ALS screen

    Has anyone had this test? I asked for one as my head feels a bit "off". I'm finding decision making a bit harder (I always was a bit indecisive) and I'm not as good at thinking things through and planning (especially in bridge ). My results came back as OK with a couple of minor issues (not specified so will need to find out). I'm wondering if the Riluzole has any effect on brain function given that glutamate is the major neurotransmitter in the brain? I've suspected that Riluzole might give me a "fuzzy head". Does anyone have any thoughts on this?
    Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

    #2
    I was on R for a few months and never noticed a difference. 🤗😁😀🤩xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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      #3
      Originally posted by Rosemary6NT View Post
      Has anyone had this test?
      I've done more ECAS tests than I've had hot dinners 😏

      Originally posted by Rosemary6NT View Post
      I've suspected that Riluzole might give me a "fuzzy head". Does anyone have any thoughts on this?
      Cant say that Riluzole ever gave me a "fuzzy head" Rosemary, but it did sap my energy for the first few months. I have taken it for over 14 years and I think my mind and memory are holding up...

      Tiredness, stress and, dare I say ageing, are more likely to dull my brain I suspect.
      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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        #4
        Ellie wow, 14years is a long time! I guess you would have noticed an effect by now . Stress, tiredness and age are issues for me so I hope they are the cause rather than dead neurones . Thanks.
        Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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          #5
          Hi Rosemary. I am not on Riluzole , and currently have a diagnosis of probable pls. I have definitely noticed some cognitive changes for myself, inability to muti task and this is basic things like reading a text and doing something else or even listening to something at the same time I cant focus on anything else, for instance cant look at something whilst chatting to someone or on the phone, struggle to concentrate on many things, and basic maths sums like adding subtracting on say a shopping receipt am struggling to do. Does this sound familiar to yourself? Is this what people mean with a fuzzy head? Am in 40s so dont think I can put this down to age!! Could this be to do with motor neuron damage? x

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            #6
            Originally posted by Zante View Post
            Could this be to do with motor neuron damage?
            Just to address that point Zante Motor neurons directly control muscle movement.

            Any cognitive or executive deficit is the result of non-motor changes. xx
            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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              #7
              Oh thanks Ellie. That's now got me really perplexed as to what's going on! Sorry to invade onto this post... had wondered if it was same as Rosemary mentioned. Now I can only assume am just getting thicker as I age!!! Xx

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                #8
                Mind you I did read that both pls and pma can cause cognitive defects and changes so maybe its that part of the pls which differs. Thanks though.

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                  #9
                  Originally posted by Zante View Post
                  Mind you I did read that both pls and pma can cause cognitive defects and changes so maybe its that part of the pls which differs.
                  Yes, you're right, cognitive and/or executive function can be impaired in all forms of MNDs, unfortunately, but not everyone is affected and for some who are affected, it can be quite mild.

                  I don't really know what you mean by "maybe its that part of the pls which differs". xx
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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                    #10
                    Sorry, I meant that pls affects the cognitive function sometimes because I hadn't been aware it could also be affected with other types of mnd for example als. I thought it was only with pls and pma for some so wasn't aware it can sometimes effect people within all types of mnd. This has been very much a learning curve with absolutely everything since I first saw a neurologist in May and my brain can only seem to absorb a small amount at a time!! I am still trying to understand what translational means with the government funding and was too embarrassed to ask ! X

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                      #11
                      And sorry Rosemary I am conscious this is of no help to you on your thread whatsoever!

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                        #12
                        Zante I think what you're saying is very relevant, fwiw.

                        The ECAS test is something we all do at some stage, although we might not know the name of the test we're doing, and it can distinguish between normal 'brain fog' and cognitive and/or executive function impairment. xx
                        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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                          #13
                          Originally posted by Zante View Post
                          And sorry Rosemary I am conscious this is of no help to you on your thread whatsoever!
                          Not at all Zante it is very helpful to hear of other peoples experiences, thanks for contributing. I have read that MND can also affect non-motor neurones in the central nervous system. I completely relate to what you say about multi tasking. It was never my strong point but I find it much worse now. I feel I am struggling with decision making and planning courses of action as well as concentration. My score for "executive" function was 40/48 with a total of 88/100 for the ALS specific section and overall 120/136. I was told that was good but it doesn't feel that good to me . The final note was "So whilst there were some minor issues showing there was nothing hugely problematic". So there is definitely some loss of ability. The brain fog I referred to was more a physical feeling of not being quite there or present or "muzzy".
                          Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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                            #14
                            Zante we must have some brain cells working though as we are aware of our condition . I feel there is also a degree of disinhibition as I am more outwardly emotional than I used to be, crying more and laughing insanely at childish things. Plus I have greeted friends with a two fingered salute which I never would have normally (ok maybe would have if inebriated).
                            Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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                              #15
                              I found myself crying for no reason then I discovered prozac.
                              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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