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What is going on? Cognitive dysfunction question

Discussion in 'Cognition' started by Kati, Feb 26, 2010.

  1. Kati

    Kati Patient in training

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    My wireless connection is down (that is the free wireless I get from a neighbor) so I have been forced to use the desktop- and that means that I can't spend too much time on it due to OI symptoms.

    I have tried on 3 occasions to work with people on the phone to get my own wireless connection working, and during all these occasions, I felt increasingly "stupid" :ashamed: where I feel like the blood is leaving my brain, I feel chest pain, I can't think clearly, I try to find buttons on the screen and it takes longer, I get frustrated, irritable, and dizzy and then i am useless for a few hours. It has never been a good experience and I am not done yet with the wireless issues... :worried:

    In the light of my disability insurance planning my return to work :)Retro eek:) I wonder how I can prove that this indeed is cognitive dysfunction, exacerbated by stress perhaps? The OT commented that I was able to drive, so why can't I sit up for an hour??? ( Personally I think driving is not too bad perhaps due to the fact that my knees are up high almost at heart level. I am still get tired and need to lay down after going out, and feel totally off when I am out. Driving is the better alternative right now (as opposed to public transportation, and since I don't have much support over here to do errands).

    So my 2 questions are: Is this cognitive dysfunction? And how do you explain to your disability what is going on, how do you prove this?
     
  2. CBS

    CBS Senior Member

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    Hi Kati,

    Sorry to hear you're dealing with this. It is not at all uncommon. Could be POTS, could be metabolic demand (Dr. Shungu on metabolic substrates (lactic acid accumulation) and blood flow in the brain), could be chronic inflammation from viral load/co-infection exacerbated by fatigue.

    I get it daily but it seems to be getting better (less severe and a smaller percentage of each day - provided I don't start feeling too good and then over do it). My CFS doc is looking at doing scans of metabolic activity in response to cognitive effort. He feels that this may be a hallmark of CFS (possibly due to inflammation). Personally, the antivirals do seem to be helping with this symptom. That isn't inconsistent with what my doc has been seeing with a high percentage of patients.

    FWIW,

    Shane
     
  3. Kati

    Kati Patient in training

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    Shane, thanks for your answer- my rheumy has ordered a spect scan, not booked yet, but as far as I understand, this is performed at rest with extremely quiet environment and laying down. Not totally sure what it will say, and it's possible that it turns out to be negative.

    You have such a smart doctor!!! :) . The test you are talking about, what is it called and is it standardized or still at a research level?

    Unfortunately I am not at the antiviral level as of yet- need to be tested appropriately and seen by someone competent.
     
  4. CBS

    CBS Senior Member

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    As my doc and I recently discussed the scan, it is limited to research and is not generally available at this time. We were talking about how cognitive function seems to be so much more metabolically intense in CFS folks than in the healthy population and he brought up work he was doing with brain scans in CFS patients.
     
  5. glenp

    glenp "and this too shall pass"

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    Neuropsychological testing and qeeg tests usually show abnormalities. Both are available locally. The echo gram with bubble injection can show a heart prob but most don't get the bubble injection which can show it.

    glen
     
  6. Lily

    Lily *Believe*

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    Hi Kati

    I agree with CBS that this is not at all uncommon. Certainly I have experienced exactly what you are talking about in the exact circumstance and others very similar. (Hate having to deal with following verbal instructions trying to fix the computer!) I think it has very much to do with OI/POTS. The blood is indeed leaving your brain, causing decreased cognition due to the hypoperfusion, plus you are trying to follow unfamiliar instructions and perform equally unfamiliar functions. I always become diaphoretic too and then anxious because I instinctively know time is running out - I HAVE to get horizontal. You really cannot concentrate when your physical symptoms are speaking louder than the voice on the phone.

    You're absolutely right about why driving is better. Not only your feet are elevated but your arms are particially elevated as well. I feel like an occupational therapist should be able to understand that, but that would depend on her understanding the hemodynamics related to CFS. With another diagnosis, she'd get it. Surely she's worked with someone with tramatic brain injury with resulting dysautonomia? Or not:(
     
  7. Kati

    Kati Patient in training

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    Glen, I suspect that the QEEG test is performed laying down, when perfusion is at the best it can be. I am not totally sure if I would show anything (I feel pretty smart laying down :D)

    As for neuropsychological testing, I have heard that who is performing the testing needs to be aware of the subtlties (sp) of ME/ CFS. I certainly would like to be tested fairly and with competence if it comes to that.
     
  8. Kati

    Kati Patient in training

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    Thank you for your input Lily. The OT is working for disability- she has been focused on activity and not on symptoms. I don't think she gets it. They just want me back to work no matter what. That's not the way I feel. From what the long timers are saying but also from specialists, the best thing to do is to be horizontal and rest. That is until they find a decent treatment for me and all of us.
     
  9. Hysterical Woman

    Hysterical Woman Senior Member

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    Hi Kati,

    In the US, some people have gotten help with their disability claim by keeping a diary of their day to day problems including describing cognitive dysfunction symptoms. I do not know if that would be effective in Canada or not.

    The cognitive symptoms for me have been awful from the very beginning. Inosine helps the symptoms for me. Doesn't make them go away completely, unfortunately.

    Good Luck, please keep us updated on how you are doing.

    HW
     
  10. Dr. Yes

    Dr. Yes Shame on You

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    Hi Kati! :Retro smile:

    What you are describing is pretty typical (I enjoy such things every day). Is it only worse when you sit up for a while? Does it get better when you lie down? Are you able to concentrate better or longer lying down? If so, it is most likely related to perfusion/ cardiovascular problems. That could include dysautonomia (POTS, NMH, etc), hypoperfusion, and low circulating blood volume.

    I'm glad your rheumy ordered a SPECT scan! (Mine won't! :Retro mad:) That has the best chance of documenting hypoperfusion. However, because it is done lying down and (except in a research study) without any simultaneous cognitive tasks, it's not a perfect way to image deficits due to cognitive exertion and upright stance. But standard SPECTs have shown hypoperfusion in many ME/CFS patients before. Hyde has some words of caution regarding the interpretation of SPECTs (especially in Canada) and other tests which he uses to diagnose ME; they're in his "Nightingale Definition" of ME which can be downloaded from this page:
    http://www.name-us.org/DefintionsPages/DefHyde.htm

    I believe the QEEG (which is basically an EEG run through a special computer program for more analytical depth) is done sitting up. It may document brain wave abnormalities and even localize them to particular areas of the brain, but you would have to find a facility equipped to do it and (probably) competent to analyze the results with respect to CFS.

    The only other scans I know of that could be useful are PET, functional MRI (fMRI) and Bold MRI. A PET scan looks at brain metabolism and shows you areas of relatively high or low metabolic function. Again, it would be better if it could be done while the CFS patient is given some cognitive tasks (math problems, visual puzzles, whatever). Maybe you could make some up and try them while they run your SPECT scan! Worth a try. Someone who's into math on this forum could print out some word problems for you and the technician could suspend the paper above your head... or you could just try to explain to an imaginary layperson the methodologies of all four XMRV studies... :eek:

    You're right about neuropsychiatric testing; of all these tests it may be the most dependent on the knowledgeability of the interpretor (hint: ELLIE STEIN!). It is worth a shot if the SPECT is negative, however, and is often recommended to help document cognitive disability in other conditions. Just make sure you have an understanding psychologist doing the test and familiarize them beforehand with the type of deficits seen in ME/CFS patients. (I can try to find you some links if you need them.)

    I can't remember if you've had a tilt table test? If positive, that could definitely fortify your documentation about OI problems. They aren't always done right; Rowe at Johns Hopkins gives a protocol for accurate results in CFS patients that you could ask a tester to follow. There is a newer test called ANSAR that supposedly does a better job than a tilt table and checks for more types of dysautonomia, but very few doctors have the machine (mainly neurologists) and it may be considered too new and experimental by disability companies.

    One other idea is a blood volume test (Chromium-51, I think); if that shows the kind of low blood volume that many ME/CFS patients have, it should also help your case.

    Hope something here helps...?
     
  11. Kati

    Kati Patient in training

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    Hysterical, I have been journalling my symptoms for almost a year now- daily. Maybe it will help me in the future. As for now, disability insurance seems to be interested into function- and activities. And the second thing they will look at is the doctor's notes. It seems that what the doctor thinks is more worthy than what the patients says.
     
  12. Kati

    Kati Patient in training

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    Dr Yes, thank you so much for the much comprehensive response... I have doubts now that you are cognitively impaired, you are way to smart for that... Please find my answers within your text so I don't forget anything I want to say...

     
  13. For Kati from Vancouver - more researchers than you think, one at UBC for POTS/ME

    Kati

    I barely know how to use this, but intend to communicate and reply to several of your entries.

    1. Dr DArren Warburton, UBC, right in Vancouver - will do tilt table testing on CFS patients. He is in the CArdiovascular REhab lab and he is well aware of CFS. Dr Carruthers may have been the person who worked with him and got him interested in CFS prior to DR C's retirement. Dr Carruthers was a key contributor to he Canadian Consensus Guidelines for clinicians, as you may know. The lab phone no. is 604-822-1337. if you want more info let me know. I hope i can find my way back in to this string or whatever it's called.
    2. Thanks for quoting my essay, the Mythbusting quiz, in another thread. I am glad to see it is getting used. I tried to reply there but failed, so if you are talking to znewby please pass on the info that I am sending here. There are updates to the number of researchers and clinicians in Canada that you list . I did a cross Canada search, University Department by Department back a couple years ago for researchers. Please note that most of our researchers in Canada are PhD researchers not MD's.. More info on that if you wish. I left off in Ontario with a couple leaps into QC and NB but had not known about Dr Joliecoeur so thanks for that info.

    I am in fairly frequent contact wtih Dr STein and helped her find many o fthe Canadian contacts for the first CFS professional development course, offered from U of C in fall of 2008. You can hear the podcasts online.

    There is a U of REgina researcher who has done transcranial doppler studies on CFS brain oxygenation changes. ARe you interested in receiving a copy? I think I attached it... if it doesn't work, go on line and type in Neary and Brain Oxygenation in CFS. YOu shoudl find it. I think it was published Jan 07. Coudl have been Jan 08.

    best regards, hope to find a way to check back in and see what you have to say.

    Linda

    3.



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  14. Kati

    Kati Patient in training

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    Linda, thank you so much for the VERY valuable information here!!! Funny that I woke up in the middle of the night and got it- but I'll take it!!!
     
  15. kerrilyn

    kerrilyn Senior Member

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    There are times when I get really sick when I use a computer - especially a desktop computer. I thought it's Electromagnetic Sensitivity. Similar experience to Chemical Sensitivity and I feel like I'm being poisoned on a cellular level, even more than usual. It will come and go. I had it for 2 weeks pretty severe recently and couldn't use my laptop for more than 5 mins at a time. ....But I wouldn't tell an OT that or they will think you are insane...

    Now I think it could be POTS, NMH or blood volume related, although sitting near the computer is worse than just sitting watching TV (even in the same position). I just bought a HR monitor (watch with chest strap) and by using that I realized I actually have POTS and never knew it. Could you find out if you have POTS or orthostatic OI and SHOW the OT that sitting is really a problem? The sooner the better, so it goes in their report ASAP. You can do a Poor Man's Tilt Table Test while you wait for more tests from your doctor.

    You need to show that because you would take too many 'symptom breaks' throughout a day that you would not be productive to your employer. Use a stop watch and sit as they want you to and time how long until your symptoms increase (physical and/or cognitive). And then lay down and time how long it takes to recover and improve and then do it again. If you are taking breaks all the time, you will not get any work done.

    That's what an OT I saw (through a FM program) taught me. I read your blog, the OT you've got is a *****.
     
  16. markmc20001

    markmc20001 Guest

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    EMF

    There are times when I get really sick when I use a computer - especially a desktop computer. I thought it's Electromagnetic Sensitivity.

    Hi Kati,

    Wehn you talked about using the phone and or computer, the first thought to come to my mind is electromagnetic sensitivty. I get Nauseated, dizzy, spacy, chest pains, and really stupid when using the computer for extended periods of time. I just figurede this out in the last couple weeks that is probably electromagnetic sensitivy. Not many people aware of it, but in sweden I think it is, they acknowledge it as a disabiling condition.

    I really hope you can return to work though, if you can find a good job that doesn;t exacerbate your symptoms. good luck!
     
  17. Koan

    Koan Be the change.

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    Kati,

    This is a bit OT for this discussion but I can't figure out how to make my wifi secure so don't use it. And, I can't sit up to compute for all the reasons you outline -- rapid onset stupidity and major seasickness. Anyway, I have my laptop wired up - plugged into the box thingy - and never use the wifi. I look a bit like I'm hooked up to life support and, I guess, I am!

    Not the real problem, I know, but may be a way to lie down and compute and sort this out!
    Not your biggest problem but
     
  18. Kati

    Kati Patient in training

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    Koan you have to phone your internet provider and check with them if you have a wireless modem. If you do they will help you set it up, if you don't they should be able to provide one to you for free. It's great to have them help you cuz they enter your screen and do it for you.
     
  19. Koan

    Koan Be the change.

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    Hey Kati,

    I was given a modem with my last computer and it works fine but I don't know how to make it private so that my neighbours can't use it - Rogers now charges extra for amt. of bandwidth used so can't just let neighbours use as I once did. So, Rogers would help me make it private! Who knew!?! Thanks for that info!!!

    At the mo. I'm happy to leave it plugged in and not have to try to wrap my brain around anything else as my thinker is struggling big time. The phone rang today and I was suddenly completely unable to understand what to do with it. :worried: The phone! :ashamed:

    This too shall pass... or I'll forget it :tongue:

    Either way :innocent1:
     
  20. Kati

    Kati Patient in training

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    Yeah Koan it's a setting to make it private- don't want to help you walk you through it because the passwords you need to enter sometimes need a specific number of digits- etc.. so Rogers would be best doing that for you- and ask about wireless, won't take too long while they're with you
     

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