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ME: what shows up in brain MRI scans?

Discussion in 'General ME/CFS Discussion' started by Sasha, Apr 30, 2013.

  1. Sasha

    Sasha Fine, thank you

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    Am being sent off for one of these - with all my neurocognitive problems I'm expecting to find half my brain missing. o_O

    What's the latest on differences between PWME and controls in terms of what brain MRI scans? People used to talk a lot about white matter lesions - is it still believed that we have more than other people? Are they significant? Do they resolve with remission? Any other findings?

    I'm assuming I won't be getting a functional scan, just one of my brain doing nothing.
  2. Allyson

    Allyson *****

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    re you having one with contrast or without - ie they inject something into your veins during the procedure Sasha.
  3. Sasha

    Sasha Fine, thank you

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    I don't know - all they told me so far is that I'm getting an MRI scan.
  4. Enid

    Enid Senior Member

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    Don't get too worried Sasha - my own ten years ago showed "patchy high signal changes" - I was quite rational at the time - just could barely walk or speak, cognitive slow down devastating too. I hope your own Neurologist can identify and aid you more. Incidently all that has improved - memory, vocabulary, thinking speed etc are back now.

    Are you checking out (or will they certain viruses - HHV6 for instance - they should persist).
  5. Sasha

    Sasha Fine, thank you

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    Thanks, Enid - I have high HHV-6 IgG titres and they're checking for HHV-6 itself by PCR. The high HHV-6 and neurocognitive symptoms are why they're doing the MRI.
  6. Enid

    Enid Senior Member

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    Oh that's great news Sasha (well you know what I mean). Looks like some progress in the UK at last.
    Allyson and Sasha like this.
  7. Allyson

    Allyson *****

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    yes they have started doing them for us in Aus too which is good..I suggest you take some earplugs as it is very noisy - they give you some cuffs but it is not enough so i took the plug in ones a well and I am glad i did.

    They also play music for you so be ready to ask for jazz, classsical etc - or you can take your own dvd which i wish i had as though i choose classical it was radio and it was a HARPSICHORD concerto !!! yuk

    i wanted some soothing piano; you have to lie there still for quite a while so you wan to be calm for it.
  8. Sasha

    Sasha Fine, thank you

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    Thanks - that's good to know! :thumbsup:
    Allyson likes this.
  9. nokmax76

    nokmax76

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    Rather than start a new MRI thread, I thought I would jump on the back of an old one. Firstly, mind if I ask what happened with your scans Sasha?

    Secondly, I've had quite a few MRI scans and CT scans that showed absolutely zilch. And as I'm sure others have found, the usual paper cognitive tests don't come within a mile of showing the full range of the problems I have. How common is it for other PWC on here (especially UK guys) to have their cognitive problems confirmed by scans and tests? And has anyone had nothing show up on traditional MRI but had problems show up on MRI/SPECT scans where blood flow is tracked while doing tasks? Because I think that's the only type of scan I haven't tried yet.
    GracieJ likes this.
  10. maryb

    maryb iherb code TAK122

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    @nokmax76
    I had an MRI scan last year, everything is just fine!!!! in their world perhaps.............
  11. Raindrop

    Raindrop Senior Member

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    SPECT Scan many yrs ago for me showed up a lot of problems very clearly.
    The prob is that a lot of neurologists do not respect the SPECt like the MRI.
    Blood flow issues can change hour to hour or day to day also, and surely
    we know this from experience with our own brains.
    The new Japanese studies led by Dr. Hirohito Karatsune and associate
    (Journal of Nuclear Medicine) showed a certain different neuro imagining
    process proving inflamation in Me/CFS pts. I hope there are a lot
    of replication studies and that the knowledge base about this
    takes off!!!
  12. Aerose91

    Aerose91 Senior Member

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    My brain is the worst I've ever seen here or in any ME case. Yet after 2 MRIs and an MRA everything came back clear which astounded me; so I insisted on getting a SPECT which showed MASSIVE hypoperfusion. The doctor said he's never seen cerebral hypoperfusion that bad.

    Yet neurologists dispelled all of it because they said SPECT shows nothing and "will change if you have a bad hair day" To that my doctor said; "yeah, sure it will but it will be a small little change, not major reduction to your entire cerebral cortex. This is obviously mitochondrial disease"

    Neurologists still sent me to a psychiatrist

    :bang-head:
    Last edited: Jun 20, 2014
  13. Valentijn

    Valentijn Activity Level: 3

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    I don't think that's going to help the hypoperfusion :D
    Little Bluestem likes this.
  14. Sasha

    Sasha Fine, thank you

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    Hi @nokmax76 - my scan was normal. :ill:

    I've since read that low-level inflammation won't show up on an MRI but that PWME show evidence of it (I think it was in one of Simon's recent articles on Phoenix Rising).

    Frustrating to have all these cognitive issues and have nothing show up.
    Little Bluestem and Valentijn like this.
  15. Aerose91

    Aerose91 Senior Member

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    My doctors also told me a QEEG might be really helpful in diagnostics as well. I would get one I just don't have the $$, though I did have an EEG which showed slowing.
    Sasha likes this.
  16. Aerose91

    Aerose91 Senior Member

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    Haha, maybe more effective than a psychiatrist!
    Valentijn likes this.

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