Here's what my consultant letter says

Her MRI brain revealed bilateral white matter high signal lesions involving the corpus callosum in the periventricular fashion as well as deep and suferficial white matter deemed most likely to represent demyelinaton A lumbar puncture was attempted on the ward but was unsuccessful however she has subsequently had a fluoroscopy guided procedure, which has revealed normal glucose and protein but elevated white cell count at 41, all lymphocytes; viral screen and Lyme seroloy on this specimen are pending as are oligoclonal bands. The extent of pleocytosis is acceptable, but uncommon for pure demyelination.

Her inflammatory markers, lupus antcoagulant, and anticardiolipin antibodies, were normal/negative.

I re-explained that her MRI brain scan has shown patches of inflammation reflecting the cerebrospinal fluid picture. I explained that as a one-off we would call this a “clinically isolated syndrome” however one should be prepared for recurrence of neurological sysmptoms in which case the situation might well be evolving to ‘multiple sclerosis’. As a pre-emptive measure, I have requested an MRI of the cervical spine, and visual evoked potentials and have complemented the blood tests by requesting ANA, ANCA and the serum ACE and will see her in three months’ time with the results. In the meantime I have advised her there is little else to do.

Do you want to know what it means?

Karen x

Yes please! I also got my date through for a spinal MRI on 22nd March.

Could I also ask if an inflammation of the central nervous system might lead to erratic temper outbursts or is that just me?! I seem to be ready to explode without notice and certainly won’t be winning any mum of the year awards this time round x

Please remember I’m not a neuro or a radiologist, but here you go…

The brain is made up of three main types of stuff, i.e. “matter”: gray matter (the stuff that does all the encoding, processing, storage, “thinking”), white matter (the stuff that carries signals between different bits of gray matter) and CSF (cerebrospinal fluid, the liquid that acts a bit like oil in an engine and the stuff they take a sample of in a lumbar puncture). The outer few layers of the brain are made up of gray matter. This is called the cortex. The white matter lies underneath this. White matter close to the cortex is called superficial. White matter deeper into the brain is called deep white matter. A lesion where the cortex joins the white matter is called a juxtacortical lesion: a lesion “next to/into the cortex”. The CSF bathes the whole brain and spinal cord and is stored in reservoirs in the middle of the brain called the ventricles. The lateral ventricles are the biggest of these, right in the middle of the brain. If you slice the brain from the eyes to the back of the head and look at the slice from the top, the lateral ventricles look a bit like a butterfly. A lesion lying next to these is called periventricular: “next to/touching the ventricles”.

The brain has two halves (hemispheres). Something in one half is called unilateral. Something in both halves is called bilateral.

There are several cables (“tracts”) of white matter that join the two hemispheres, so they can work together. The main white matter tract is called the corpus callosum. It is fairly central and runs close to the lateral ventricles.

“High signal” simply means patches that gave off a high signal in the scanner which means that they appeared brighter than expected on the images. High signal lesions are often called white spots because of this.

So, “bilateral white matter high signal lesions involving the corpus callosum in the periventricular fashion as well as deep and suferficial white matter deemed most likely to represent demyelinaton” means that you have a number of lesions in the white matter of both halves of your brain and that these are close to the corpus callosum at the lateral ventricles as well as nearer the cortex and deeper in. The radiologist believes that they are the right distribution, size and shape to be due to demyelination.

Your LP results are only partially back. The white blood count is on the high side for MS, which might have given them a pause for thought about alternative causes, but it seems that your neuro is happy that it is MS-like demyelination. The other results are in keeping with MS. If your viral and Lyme tests are negative and oligoclonal bands positive (in the CSF but not in the serum from the blood sample taken at the same time), then it will reinforce that decision.

The line about the inflammatory markers means that they have ruled out other causes of MS-like symptoms including syphilis, lupus and Hughes Syndrome.

So your neuro is saying that your lumbar puncture results and your MRI results are consistent with demyelination and therefore with an MS-like attack. Because you have had only the one attack, he is calling it a Clinically Isolated Syndrome (CIS). He’s saying that the diagnosis will change to MS if you have another attack. (MS isn’t diagnosed after one attack because some people never have another one.)

The rest of the tests he’s ordering are to tick all the necessary boxes for alternative causes and to provide a baseline for any future tests. An MRI baseline is important for two reasons: a new lesion can demonstrate a second attack and therefore confirm diagnosis even if the patient hasn’t had any new symptoms (“clinically silent” lesions, i.e. lesions that caused no observable symptoms, are common in MS) and new lesions are often part of the criteria to get onto DMDs sso they need to be able to tell what’s new.

As far as anger outbursts go, yes, it’s possible that neural changes can cause them, but I can’t imagine that anyone with weird and distressing symptoms going through the whole rigmarole of diagnosis doesn’t have them! All this cr@p shortens fuses and can make a lot of us have little patience with what takes on relative unimportance. Fatigue is another cause, and an awful lot of us have that in spades :frowning: Do try not to bottle up your fears and emotions - find a positive way to let them out (counselling? talking to a friend or partner?) and you may find that other things start to make you less angry?

Do explain to your kids what’s going on too if at all possible. They will know something’s not right and may be relieved to find out that it’s not life threatening! The MSS and the MS Trust do excellent booklets aimed at kids of different ages - they are free to order or download.


Karen x

Oh Karen, thank you so much for putting this into understandable language for me, it’s a great help as I do feel totally in the dark about what’s going on (or not). I was interested to see your comments about the spinal MRI and that it may confirm MS (or have I misunderstood this)?

Thanks also for comments on my terrible mood swings, so nice that someone understands because there is certainly very little understanding from my husband on that score. I’ve been off work since last April on maternity leave and I think the past 10 months have been the most eventful in my entire life! My father who lives overseas is also staying with us for a few months until he gets called for a hernia op along with the fact I go back to work next week and other nasty family issues, my stress levels aren’t particularly healthy at the moment! My mother suggested I ask the doctor for valium yesterday!

I’m not saying the spinal scan will confirm MS, no. What I mean is that you need to know what your spinal cord looks like now so that you can compare future scans with it. If a scan in the future shows lesions that aren’t there at the moment, then they must be new - and therefore you must have had another attack.

It’s a good idea to see your GP if you are struggling with all that’s going on (who wouldn’t?!). If you can’t let it all out at home, then you certainly can in the GP’s office :slight_smile: