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Brain MRI for ME Patients?

Old Bones

Senior Member
Messages
808
From personal experience & discussions with others, it seems neurologists are the most (willfully?) ignorant of the various relevant medical fields, when it comes to SEID/CFS.

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

1st neuro I saw was nice. He ordered a brain and spine MRI w/ contrast, but no abnormalities except for a couple spots that they said were normal . . .

2nd neuro was a MS specialist. Because I also have bladder issues, and numbness/weakness in my left leg I wanted to make doubly sure MS was ruled out as the cause of my issues.

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)?
 

Dechi

Senior Member
Messages
1,454
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.
 
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TigerLilea

Senior Member
Messages
1,147
Location
Vancouver, British Columbia
@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 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:
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
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
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
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.
 
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Countrygirl

Senior Member
Messages
5,429
Location
UK
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.
 

Crux

Senior Member
Messages
1,441
Location
USA

PennyIA

Senior Member
Messages
728
Location
Iowa
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.
 

Cohen2

Senior Member
Messages
119
Location
New Zealand
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.
 

Jessie~

Senior Member
Messages
401
Location
Michigan USA
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).
 
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TrixieStix

Senior Member
Messages
539
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 . . . .[/QUOTE said:
Important to remember that MS and ME/CFS along with a huge list of other conditions have a big overlap in symptoms. Thus why many ME/CFS patients go from specialist to specialist over years time before settling on ME/CFS. You first have to rule out a ton of other things first.

As for getting an MRI of your brain and a portion of the spine (lesions can appear there also) to look for any evidence of MS it's best to make sure it's ordered by a neurologist as the MRI has to be done in a specific way and ideally with IV contrast. For example my primary care doctor had me do a brain MRI here at my local hospital (no contrast) and when I saw the neurologist he had me undergo another MRI (brain, spine, w/contrast) as the one my PCP had done was useless for diagnosing MS. If the MRI is not done to the correct protocol for MS lesions can be missed.

A very small % of ppl with MS can have a "normal" MRI but they will in time go on to develop visible lesions. I asked the MS specialist I saw about this and she said that yes this is true for a small % but that since I had been having symptoms for a couple years that it was almost certain they would have seen evidence of MS on my MRIs. She also had me do a visual evoked potentials test just to be doubly sure since I had experienced such an sudden onset of visual changes, but alas it was normal.
 

PatJ

Forum Support Assistant
Messages
5,288
Location
Canada
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.
 

Gijs

Senior Member
Messages
690
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?