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ME/CFS: In Free Fall Through the Looking Glass
Jody Smith continues to try to put into words the horror of the altered state that hobbles the brains of those with ME/CFS...
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Brain Lesions

Discussion in 'Neurological/Neuro-sensory' started by Googsta, Jan 5, 2012.

  1. Googsta

    Googsta Doing Well

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    I have had three brain MRI's showing several lesions but my Neurologist does not beleive I have MS.
    The first I had was in January 2010. I had a second in August 2010 which showed more lesion activity than the previous scan. There was also a plaque (lesion) reported on the cervical spine but my Neuro argues this as being a 'fragment' ?? My last MRI was March 2011 which showed some improvement of the original lesions.
    I'd never heard that lesions had to be a certain size to indicate MS prior to this, if anyone could shed any light I'd really appreciate it. I also wonder if anyone with CFS has returned MRI's with lesions?
    Thanks :D
  2. Enid

    Enid Senior Member

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    Don't think I can help Googsta but simply to say my brain MRI showed "patchy high signal changes" (spine normal) and wonder if they are talking about the same thing - he ruled out MS too. No recent MRI to compare but the severity of ME symptoms have improved as have cognitive issues enormously as long as I pace myself. Patchy high signals I'm told has to do with MS but it didn't develop.
  3. Sparrow

    Sparrow Senior Member

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    I don't have any first-hand experience with this, but I do know that brain lesions were one of the things most definitely noted by doctors investigating one of those initial outbreaks of CFS (it was Dr. Cheney, I believe). So it definitely seems possible as a CFS symptom.
  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I don't remember names, but plenty of people here have reported brain lesions showing on their MRI's with ME/CFS. Also less gray and white matter.

    Sushi
  5. Googsta

    Googsta Doing Well

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    Thanks Sushi :Retro smile:
    I think your right Sparrow, I remember the Lake Tahoe doctors paid for their patients to have MRI's, can't remember if that was Dr Cheney though.
    Thanks for the responses, puts my mind at ease a little :Retro wink:
  6. Annesse

    Annesse Senior Member

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    Hi Googsta, we had a discussion on this topic on another thread. The thread is called "The difference between MS and ME." Here is one of the posts.

    Hi Fire, Here is one very recent study that shows the presence of white matter lesions in CFS. http://bjp.rcpsych.org/content/167/1/86.abstract

    Of course, just as important as their presence is where they come from. Both MS and CFS patients lack B12. In the study entitled:plasma Vitamin B12 Status and Cerebral White-matter Lesions it states in the conclusion, "These results indicate that vitamin B12 status in the NORMAL RANGE is associated with severity of white-matter lesions, especially periventricular lesions...it is hypothesised that the association is explained by effects on myelin integrity.." It also states, "Poorer vitamin B12 status was SIGNIFICANTLY associated with greater severity of white-matter lesions....
  7. Googsta

    Googsta Doing Well

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    Thanks Annesse, I wish I had this information a long time ago! Thanks for the Link :thumbsup:
  8. kaffiend

    kaffiend Senior Member

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    Here is a picture of my MRI from March 2011. This is about a year after onset. I've put some arrows pointing to the small white matter hyperintensities. I also had some small lesions in the hippocampus.

    On thing that distinguishes MS lesions is their location. In MS, lesions tend to cluster around the ventricles (the black regions containing cerebral spinal fluid seen in the center of the brain on the 2nd picture in the top row). This periventricular area contains the motor and sensory fibers to and from the spinal cord, which is why people with MS oftentimes have paralysis and use canes, wheelchairs, ect.

    A neurologist recently told me I probably had a case of untreated post-infectious allergic encephalomyelitis, sometimes called acute disseminated encephalomyelitis (ADEM). He's seen a few cases and interestingly, it occurs about a week after a viral infection or vaccination. It got me wondering whether ME/CFS is the complication of untreated ADEM.

    Attached Files:

  9. Googsta

    Googsta Doing Well

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    Thanks for sharing that Kaffiend :Retro wink:
    ATM I cannot find all my MRI reports, only one from March 2009.

    It say's there is a single well defined tubular appearing lesion perpendicular to the ventricular surface within the left frontal lobe. On the right side, there are 1 or 2 juxta cortical hyperintense abnormalities of the FLAIR sequence, 1-2mm. Conclusion - Several intracranial white matter lesions are shown. The most prominant is within the left posterior frontal lobe.

    The subsequent MRI showed another 1-2 lesions & largening of the orginal ones, then the third MRI showed an improvement.
    I wish I could post the images but I have trouble with the program on those disks.

    The Neurologists opinion was that the radiologist was 'over reporting'. It just makes me nervous as the first time I saw him he said "No way it's MS", then the second time he told us to prepare for the MS diagnosis & the third time he said definately not & he has no idea :confused:

    I guess really I already know the answer : I need to find a decent Neuro - if there are any.

    I do have a question for you regarding spasticity. Sometimes my thumb or fingers go into some type of spasm, they contort & bend & I have to use my other hand to straigthen them out, it's very painful.
    I have had sudden spasms one of my calf muscles that were sheer agony. They were sudden & I had to hold onto the wall to stop me falling, they settled a little after about 30 minutes. My GP had me checked for a blood clot but Ultrasound didn't find one. Is this anything like spasticity?
  10. Freddd

    Freddd Senior Member

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    Hi annesse,

    In addition, Subacute Combined Degneration is also part of b12 deficiency and includes damaged myelin. A distinction between MS and SCD is that SCD is more bilateral than MS. Of course b12 deficiency is supposed to be ruled out to come to a MS diagnsosi yet researchg shows that MS, ALS, CFS, FMS, SupraNuclearPalsy, Autism, Alzheimer's, Parkinson's all have LOW cerebral spnial fluid levels of cobalamin regardless of what the body serum level is, that is a very poor way to "rule out" b12 deficiency and all the diagnosis of MS are suspect. MS also has low CSF HCY spoecifically indicating low MB12. ALS has both HCY and MMA indicating low adb12 and low mb12. Since MS appears to respond very well to the active B12 protocol especially adb12, mb12, Metafolin and l-carnitine fumarate, omega3 oils, the same as CSF and FMS, similar to SCD, it's a pity that more can't control their fears and try it,
  11. Francelle

    Francelle Senior Member

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    Neuro's (many) act dumb where M.E. is concerned. I have come to the conclusion that they know exactly what is happening to the M.E. patient (even before we do), as they must hear similar stories over and over again, but express plausible deniability.

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