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What symptoms would I expect?

Hi all I’m new here and a little in limbo like most!. I’ve been experiencing neck pain so was sent fir a cranial scan… Nothing came back with the neck only " multiple areas of demyelination" explained the doc. What symptoms ould I expect can anyone tell me?. Thanks x

hi Lisa

Im to in limbo, on speaking to my GP, he said my symptoms have MS tendancies there are vision problems, balance, dizziness, fatigue, stiffness, tremour. Hope this helps, btw i took have problems with my neck, have you need ref to a neurologist?, hope this helps. v

Hi Lisa,

“Multiple areas of demyelination” is certainly NOT nothing! What on earth are they talking about? Have you been told you will be monitored, referred for further investigation, or whatever?

There are no symptoms that are absolutely universal, so it’s difficult to know exactly what you should expect. A surprisingly high proportion of lesions produce absolutely no symptoms whatsoever - a person might not know they had them. These lesions are called: “clinically silent”.

Of those that do produce symptoms, it depends where the lesion is, and which functions that part of the brain is responsible for. Two people with the same number of lesions can have very different symptoms, because their lesions aren’t in the same places at all. That’s what makes it so hugely variable.

If you get a lesion in the spinal cord, rather than the brain, it can affect any part of the body below the site of the lesion. Spinal cord lesions always affect places below them, never above, for the simple reason the brain is at the top, so anywhere above the lesion can still communicate with the brain fine, but anywhere below it might be having problems.

Hope this helps.

Do chase up what is being done about this. “Multiple demyelinating lesions” isn’t an MS diagnosis. But it isn’t nothing, either. To be told it’s “only” demyelinating lesions is ridiculous. This is a significant clinical finding. I don’t mean to scare you, as it doesn’t necessarily mean you have, or ever will have, MS. Some people get just one episode of demyelination, cause unknown, but it never happens again. But I find it bizarre it’s been explained to you as if it was almost a trivial finding, with no real significance. Please query.

Tina

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Hi again Lisa,

Sorry - I’ve just seen that you are the same Lisa I replied to a few posts ago (my memory is dire!), so I see you have a much longer and more complex medical history than just recently having a scan, and being told you “only” have demyelinating lesions. I had read it as if this was your first and only contact with the medics, but now realise it’s not - in fact you had a prior diagnosis of TM, and have had several episodes since.

I would be surprised if the latest “multiple demyelniating lesions” don’t now lead to diagnosis, but it’s still very unpredictable which symptoms you might get. MS has very many possible symptoms, but hardly anyone gets all of them, and certainly not all at once.

Tina

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