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symptoms

hi back here for the first time since october 16 after mri which showed signs of demyelination, and normal spinal tap.so no diagnosis. all symptoms went away.Then in november 17 started to have aching legs day and night still have.now have burning tingling on legs.burning sensation across stomach feeling of wearing a tight sock on lower left leg couple of numb fingers on left hand(.all these things come and go) sometimes when i turn my body seem to slightly lose my balance.

been for another mri scan with contrast head and spin. was told spine normal. findings in the brain showed features consistent with demyelination but neurologist said"this is not a typical scan" not sure what that means? he said he found it quite difficult to interpret the scans as they are no means typical to ms.

he has said it would be sensible to obtain a formal neuroradiological opinion if there remains a doubt.specialist tests at a neuroscience centre should be carried out.

one last point since mri wife says some days i keep using wrong word or name or cant think of word and say thing instead.

has anyone have an opinion on all of this

thanks garry

Hello Garry

So is your neurologist referring you to a neuroscience centre for more tests or for a neuroradiologist to view your scans? Or just sending the scans off for a second opinion?

Or is he just leaving you hanging about in limbo?

It sounds like the neurologist thinks your clinical exam looks MSy. And he said there’s demyelination in the brain. Sorry, I have no idea what demyelination but ‘not typical for MS’ means.

Lots of us do have slight to moderate (or moderate to severe, or just a hint) of cognitive damage / impairment. So screwing up words and forgetting the name for (eg) the thing you cut food up with! is pretty normal in my world. Or the thing that really, really annoys the hell out of me, is reading a book and forgetting the plot within a few weeks. Obviously apart from the fact that it’s cheaper.

I do hope your neurologist gets to the point and either finds someone to tell him what your scans mean, or refers you to someone who can figure your brain out!!

Sue

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hi sue thanks for your reply. neuroradioigist to view scans for second opinion, if no different then more tests. are aching legs that feel slightly weak a problem for most people. most other symptoms seem to come and go would this be normal. tingling numbness in hands is only slight. sometimes think I am just imagining it all. body is not right just want to know what is causing it.first neuro said it was all to do with nervous system thanks Garry

We do all have a variety of symptoms Garry, so what I might describe in similar words could be different to what you’re experiencing! Neuropathic pain/symptoms can do all kinds of strange things.

And of course, your symptoms may not be caused by MS at all.

Whereas mine not only definitely are, they go back 21 years, so my weak legs are utterly pathetic legs. And tingling numb hands for me actually hurt and don’t work like they should!!

So, comparing one persons symptoms with another isn’t necessarily all that helpful.

I do of course remember what it was like when I thought I might be imagining things! I wasn’t. And chances are neither are you. Neuropathic pain / symptoms are weird, some symptoms are generally classified as part of the pain spectrum, like tingling - tingling that gets worse is most definitely painful. Yet it sounds so gentle and almost nice!

Hopefully you won’t have long to wait for the second opinion, hopefully then some answers rather than more tests and more time spent wondering and worrying.

Sue