I have had numerous test because of muscle spasms, pins and needles, sight and throat problems I am awaiting test results. I have had a MRI which states the following:- Numerous T2 hyperintense lesions mainly within the subcortial white matter of both cerebal hemispheres although a couple are; periventriclar and juxtacortical in location (12 in total). I understand that the lesions have increased since I had an MRI 18 months ago. I also have B12 deficiency for which I have injections every two months. I also had a CSF and am waiting the results of this.
I’ve been reading this forum for a few months and picked up some information (I hope correctly) so I don’t know much. Karen (Rizzo) is the expert on MRI and B12 on the forum.
However, It would appear that the MRI scan shows scars (lesions) that could be caused by MS. There is scarring In two areas that that fulfill the criteria for dissemination in space (DIS). [DIS can be demonstrated with at least 1 T2 lesion in at least 2 of 4 locations considered characteristic for MS ((juxtacortical,periventricular, infratentorial, and spinal cord) (Diagnostic Criteria for Multiple Sclerosis:2010 Revisions to the McDonald Criteria, Polman et al., 2011)]. If they have increased between scans then it would appear there is MRI evidence of dissemination in time (two or more attacks). However, I understand B12 deficiency can cause lesions of the same appearence.
Jon was a bit too kind about my expertise: MRI I’ll vouch for, B12 I’m really just a semi-informed novice Anyway, I can certainly help further with the MRI bit.
“Numerous T2 hyperintense lesions mainly within the subcortial white matter of both cerebal hemispheres although a couple are; periventriclar and juxtacortical in location (12 in total). I understand that the lesions have increased since I had an MRI 18 months ago.”
When they do MRI scans, they use different settings so that the different types of brain matter show up as different shades of gray - the higher the signal from an area, the paler the colour it is in the image. There are three main types of brain matter: gray matter (the stuff that does all the encoding, processing, storage, “thinking”), white matter (the stuff that connects all the bits of gray matter) and CSF (cerebrospinal fluid, which is a bit like the oil in an engine). In a T2 scan, gray matter looks pale gray, white matter looks darker gray and CSF looks white. Lesions (areas of damage) contain fluid so they also show up white (or at least paler than expected from the surrounding matter).
So, “numerous T2 hyperintense lesions” basically means lots of white spots on the T2 scans.
The outer layers of the brain are made up of gray matter. These are called the cortex. Under this is called subcortical. The matter lying just under the cortex is white matter. When you go further into the brain, the white matter starts being called “deep” white matter.
The brain has 3 main parts: the cerebrum (the big bit that everyone thinks of as the brain), the cerebellum (the separate, round part underneath the back end of the cerebrum) and the brain stem (the bit that joins the cerebrum and the spinal cord: basically the top of the spinal cord). The cerebrum has two halves: the hemispheres. So “mainly within the subcortial white matter of both cerebal hemispheres” means that most of your lesions are within the white matter lying under the cortex and in both halves of the big bit of the brain, the cerebrum.
Periventricular basically means next to the ventricles. The ventricles are the lakes of CSF lying in the middle of the cerebrum. It is a typical location of MS lesions.
Juxtacortical basically means right next to / into the cortex. It is another area that is typical of MS lesions.
So, you have 12 lesions which lie mainly in the white matter, but some are next to the ventricles and some are right next to the cortex. The fact that you have more lesions now than when you last had your scan means that whatever is causing these lesions has been active in that time.
Jon has mentioned the McDonald criteria. It is worth googling for these - they are free to download and explain exactly what is needed when diagnosing MS.
The basic criteria are dissemination in time and dissemination in space: in other words, more than one attack and more than one place affected. The MRI criteria for proving these are new lesions in a second scan and lesions in at least 2 of 4 areas of the central nervous system that MS tends to attack: periventricular, juxtacortical, infratentorial (basically the cerebellum and the brain stem) and the spinal cord.
From what you’ve said, your MRI results meet both these criteria, however, your B12 deficiency does confuse matters a bit because it can cause lesions and be very difficult to distinguish from MS. If your B12 levels have been normal since you had your first MRI, then I would think that it couldn’t be to blame for the new lesions at least, but I’m not 100% confident. I have also read that B12 lesions can resolve (disappear on the MRI) once levels are restored to normal, but again I’m not 100% confident. Anyway - the B12 deficiency is something that the neuro will have to try and factor out. There are also other things that can cause lesions so while it looks awfully like MS, it could still be something else.
Thank you both, that is certainly more than the neurologist explained. At the time of the MRI my B12 was 2000, that doesn’t mean too much because not all of it is utilised. I did ask if it was as a result of the B12 deficiency and he said no; I am not convinced. Will have to wait for the rest of the results. The only good thing was he said I could have monthly B12 injections, as he felt it was good for MS and that some people thought there was a link!
Visual evoked potentions and electroretinogram - normal
Brain MRI - None of the lesions demonstrate enhancement or restricted diffusion to suggest active disease. The number of lesions is excessive for age, and the distribution is not typical for small vessel disease. The appearances are supportive of but not solely diagnostic for inflammatory demyelination.
Cervical Spine MRI -There are shallow, broad based discal bars at the C4/5 - C6/7 levels. There is resultant minor canal stenosis at C5/6 with minor cord flattening.
Conclusion: The brain MRI shows a distribution of white matter lesions that is atypical for vascular disease and may be related to inflammatory demylination. She may have a mild form of multiple sclerosis of late onset but oligoclonal bands in the CSF are negative which make this diagnosis less likely.
Your MRI shows lesions that are consistent with demyelination (which means things like MS), but these are not currently active, i.e. inflamed. So basically they are like scars rather than wounds. There are other causes of these types of lesions, so the neuro is saying that there might be something other than MS causing them, which is supported by your LP not showing oligoclonal bands.
So, the MRI points towards MS, but isn’t conclusive.
What is the neuro suggesting? Wait and see? Other tests?
Sorry to hear that it didn’t turn out to be straightforward :-(t
Telling the difference can be tricky, but leukoencephalopathy lesions don’t look exactly the same as MS lesions and, according to my MRI “bible”, where the lesions are gives a lot of clues as to which type of leukoencephalopathy it is.
I hope that getting a diagnosis gets you into the right clinical team, and lots of support.
Thank you Karen, I know nothing about leukoencephalopathy other than there is no treatment and no cure but I guess MS is much the same. I am being referred to Kings College Hospital to a neurologist who specialises in it, they will just monitor me and check genetics from what I understand.
Back ! Apparently the diagnoses of Leukodystrophy given to me in December was a miscommunication, although I would call it misdiagnoses. I am being referred to an MS Specialist but I have been told I can’t have MS because there were no oligoclonal bands. I don’t understand any of it.
I am sorry that dx is being so complicated. A small proprtion of people are dx with MS without oligoclonal bands. At least you have been refferred to a an MS specalist.
Anyway, I can certainly help further with the MRI bit.
I hope the MS specialist is a good one! Karen x