Can anyone help to explain please

Everyday living
1

I have so many questions queuing up in my head now. So first things first. i know you are not al, doctors :slight_smile: but can you help me decipher my initial diagnosis please ?

It says Demylination disease lesion. 3 intracerebral​

white matter lesion and one within the cervical cord.

I understand the gist and what the jargon means. However, does this mean i have 4 or 5 lesions ? Also does one lesion equal one relapse ?

Now that Im getting over the initial shock I am desperate for more information.

Thanks for being patient with me x

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Hi Janet,

As you say, deffo not a doctor here, but will try for you, OK?

This reads to me that you have four lesions in total - three in your brain, and one in your spinal cord (neck region).

Reading from this alone, it’s not a diagnosis of MS (I’m not sure if you’ve already had a diagnosis separately), but someone with these findings would be at higher risk of MS - but might be lucky and not go on to develop it. Or, more rarely, have a different disease that causes demyelination - but MS is by far the most common.

No, you can, and usually do, have multiple lesions per relapse. Four is not actually a huge number, and could very likely all come from a single relapse.

I had six brain ones and at least one spinal one when first scanned, and was informed that was actually “not bad”, as it was not uncommon to see patients my age (44, as I then was) with literally dozens. So don’t get too hung up about the numbers game. Four is four too many, of course, when what we really want is zero - but it’s not at the crazy end of the spectrum.

A normal MRI without contrast cannot tell whether the lesions are recent or old - it can only see they are there. An MRI with contrast can tell the difference between active (current) lesions and old ones. If you had a mixture of active and inactive (old) lesions, it would suggest they came from at least two different relapses (one that you’re having now, and at least one other in the past). But it still can’t tell how old the old ones are, and whether they arrived from a single relapse, or several.

That’s why, at diagnosis, they can’t tell how long you’ve had it - they can only go by your own reports of when you first started having symptoms. If all four were active now, it could suggest it’s your first and only relapse, and therefore isn’t “multiple” yet, and can’t be called MS.

Hope this helps!

Tina

x

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Thank you Tina, that’s brilliant. Neurologist said, based on history I described that he believes 2 previous relapses and gave definite dx. Can there be lesions further down the spine that they wouldn’t have seen on a head and neck mri ?

I have so much to learn !

Janet x

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Well, the way I read that, you have 4 lesions, three intracerebral and one in the cervical cord. Where they are affects what they do… if you have one in the bit of the brain that controls memory, it hits your memory. I think that’s where mine are; have a memory like a whatchamacallit, thing with holes in for draining vegetables…

1 Like
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Hi Janet,

Brain and neck are the most common sites for lesions, which is why they are the areas they usually scan.

You can get lesions further down, but it’s rarer. I had to be piggin’ awkward and have one at thoracic (chest) level, didn’t I?

Tina

x