Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Brain MRI for ME Patients?

Discussion in 'Neurological/Neuro-sensory' started by Old Bones, Dec 21, 2016.

  1. Old Bones

    Old Bones Senior Member

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    @Kenny Banya 's thread (above) contemplating neurologists as the most-ignorant medical specialty when it comes to ME was the incentive for this question.

    Like @TrixieStix , I will be having a brain MRI next year to determine if there is another explanation (MS was suggested) for my worsening neurological symptoms. Perhaps I will be fortunate in avoiding a similar horror story to those recounted in Kenny's thread about neurologists, since my MRI has been ordered by my supportive GP.

    I couldn't help myself from "Googling" MS symptoms. I checked "yes" to most of them -- no doubt a common experience for many of us. Just wondering . . . .

    How many PR members have had a brain MRI? Was it helpful (i.e. did it show any abnormalities)?
     
    Chateau, ScottTriGuy, erin and 5 others like this.
  2. Dechi

    Dechi Senior Member

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    I had one prior to being sick that showed nothing besides a spenoidal sinusitis, probably chronic. I am awaiting a call for an appointment at the montreal neurological institute to get another one, soon I hope.

    Usually EMGs can rule out MS. I had 3 of those and they were negative.
     
    Last edited: Dec 21, 2016
    Old Bones likes this.
  3. Comet

    Comet I'm Not Imaginary

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    I have had a few over the years, one with contrast many years ago. They were normal, so my symptoms were dismissed. :meh:

    Glad you have a supportive doc, @Old Bones. :)
     
  4. TigerLilea

    TigerLilea Senior Member

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    I saw a neurologist about 20 years ago for nerve pain after dental work and it was not a good experience. He asked about any conditions that I had and I naively told him I had CFS and that was it. He told me I was depressed; when I tried explaining that I wasn't he cut me off and said 'Yes you are. CFS is depression. You just think you have pain but you don't'. That was it. He had no further interest in pursuing why I was having issues after having a root canal done. It took me years to finally find out from an ENT that I had nerve damage from the root canal. :mad:
     
  5. *GG*

    *GG* Senior Member

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    I had an MRI done of my brain years ago, had it done due to constant and varying headaches. Was in a research study in Boston, had an fMRI done of my brain. Not sure where that is at, probably still not published, and this was at least 3 years ago!

    I recall the guy heading it up was from Italy, came to the US via Canada.

    GG
     
  6. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Don't know if this is any use - can't make much sense of it at present:

    2.10.14 Clinical history...Episodes of expressive dysphasia and dysgraphia with headache and fever. MRI head: Normal study. No haemorrhage, collection, infarction or mass lesion. Conflicts with report from CT scan

    9.12.15. Dr * will ask for clarification (spoke to him 17.2.16) He phoned back same day, having spoken to someone who looked at both scans (MRI and CT, I think) and found that the ‘numerous lacunar infarcts’ referred to in CT report were also present in MRI today...

    CT Head: Note is made of the MR head from 2 October 2014. There are new areas of low attenuation within the deep cerebral white matter in keeping with progressive small vessel disease. In addition there are numerous old lacunar infarcts in the basal ganglia on the left, these were seen on the MR from 2014.

    Conflicts with MRI report. Dr * will ask for clarification (spoke to him 17.2.16)
    He phoned back same day, having spoken to someone who looked at both scans (MRI and CT, I think) and found that the ‘numerous lacunar infarcts’ referred to in this report were also present in MRI 2.10.15. (did I mean 14?)

    These surveys were done after I suffered apparent brain problems.
     
    Last edited: Dec 21, 2016
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  7. Countrygirl

    Countrygirl Senior Member

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    Don't know if this is of any use, but following the onset of bouts of malignant hypertension and stroke-like symptoms, the result of my MRI stated that there was hyperintense foci through the basal ganglia and a number of areas on the falx. The report said they did not know how to interpret the results and that was the last I heard.
     
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  8. Barry53

    Barry53 Senior Member

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    You must have been tempted to give a quick jab in the you-know-whats and say "You just think you have pain but you don't"
     
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  9. Crux

    Crux Senior Member

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    Old Bones likes this.
  10. TigerLilea

    TigerLilea Senior Member

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    Wish I had thought of that at the time. :D
     
  11. PennyIA

    PennyIA Senior Member

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    I've had multiple brain MRIs while there was also some 'white' bits that were declared of no consequence... they clearly ruled out MS. The part I struggle with is that 40 percent of MS patients don't have lesions in the brain ... but then again, I'm not convinced I have MS enough to try to talk them into a spinal tap.
     
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  12. Zombie_Lurker

    Zombie_Lurker

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    I had an mri a few years ago when I was at my very worst. I was so hopeful that it would show something so I could get a different diagnosis other than cfs. Even though the mri with contrast showed no abnormalities, it was helpful to rule out stuff like ms.
     
  13. Cohen2

    Cohen2 Senior Member

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    Had an MRI about a year ago after having ME for 13 years. The results I got just said the scan was entirely normal. Of course the neurologist neglected to tell me that he thought my right optic disc might be pale.
     
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  14. -Jessie-

    -Jessie- Senior Member

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    I have had MRI without contrast and then years later with contrast. The first one was supposed to be with contrast, but my insurance wouldn't cover that at the time, so they did it without contrast. It showed a lesion in my left frontal lobe, and that Neurologist told me it probably correlated to my history of Migraines and Fibromyalgia, and there was also a bulging disc in my neck.

    The follow up MRI done years later with contrast and ordered by a different Neurologist showed the same lesion, plus thickening of the wall in some of my sinus', remodeling of my TMJ, and a Syrinx(cyst filled with cerebrospinal fluid) in my spinal cord at my C2 & C3 vertebrae. (I was concerned about the Syrinx, but the Neurologist was not concerned at all).

    Finding no new lesions has kept MS ruled out for me.

    The other findings were either not important to the Neurologists, or were expected to be dealt with by different specialists, and I never got an explanation of what they meant (I can't tell you how many times that has happened to me... just assume it is someone else's problem to deal with, and blow me off).
     
    Last edited: Dec 25, 2016
  15. ryan31337

    ryan31337 Senior Member

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    Brain CT back in the late 90s, MRI earlier this year, both investigation for migraine. Both completely normal as far as I'm aware.
     
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  16. TrixieStix

    TrixieStix Senior Member

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  17. erin

    erin Senior Member

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    I had an MRI scan 7 years ago, MS was ruled out.
     
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  18. Kenny Banya

    Kenny Banya Senior Member

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    My brain MRI in March this year ordered by the sociopath (a.k.a neurologist) showed nothing. Totally healthy brain.
     
  19. PatJ

    PatJ far and free I gaze

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    I've had multiple MRIs of my brain and spine. The brain MRIs always show multiple non-specific lesions in my frontal lobes. I have a history of migraine (when I was a teenager) and apparently migraine can cause small brain lesions, and so can head injuries. MS was ruled out for me after extensive testing.
     
  20. Gijs

    Gijs Senior Member

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    I know some ME patiënts who have white lesions in their brain some have POTS maybe low bloodflow can be the cause of this. Are these ME patiënts a different subgroup?
     
    Webdog likes this.

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