Last reply 2 months ago

Hi All
I can’t remember if I asked this before so sorry if I have.
I still keep getting different temperature zones in my body, to me it’s just me and my MS, but I had it the last 2 times I have seem my nurse, and she said it’s not the MS and she thinks it a different issue and I need to see my GP. As it might feel like a different temperature to me, but it shouldn’t feel it to others and it should cause the actual temperature to change.

Am I going made but to me if the nerves aren’t working properly it would tell one bit to heat up and another to cool down so you would feel it?

Thanks for listening


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2 months ago


It has been a feature of my MS for the last 15y or so. Typically my feet feel like they are going to burst into flames of an evening. The4y feel absolutely normal to the touch. I keep an ice block in the freezer to wrap in a towel and rest them on when it is v bad, usually in the summer. Another trick is to fill a plastic washing up bowl with ice water and just plunge my feet in it when I am sitting at my desk or the table (more often than not these days)

This has been accepted – albeit with a shrug – by my MS team for as long as I can remember. It seems to be ‘just one of those weird things’ as far as all are concerned.

It is not untypical for a nurse – when presented with something not v obvious or something they have not encountered before – to hand it off to a medic. I’d ask her if she would bring it up with the neuro first. The chances of your GP either knowing or being able to suggest anything other than a practical solution are slim.

NHS emails are not hard to figure out. providing the name isn’t super common it is [email protected] – I’m not on NHS email but mine would be [email protected] if I were. There is nothing stopping you.

Email your neuro. Keep it brief, tell them why you want to know, flatter them a bit about how knowledgable and caring they struck you as, and just be polite and succinct. They are no better than you, they just specialised at school/uni and stuck at it accumulating knowledge. They are highly unlikely to reply, but they will see it and refer it to the nurse. You are going top down.

Just an IMHO approach.

Good luck,


2 months ago

Thanks @dominics
So for you they feel on fire but if you touch or someone else does they don’t feel hot at all?

As mine actually feel when people touch them boiling hot or freezing cold.

but I like the idea of emailing them I might actually get a quicker response



2 months ago

@shona12 They feel normal to mine or others touch. To my brain, they feel on fire.

The whole thing is odd. I no longer fret too much, metaphorically shrug, and put it own top general MS weirdness.

I was in sales a long time ago, quickly learned that it wasn’t personal when someone said no. t paid to rootle around and find out email configurations etc. Send one to their private secretary then act all confused about the distinction. As long as they see it…who cares. No harm was done. Your brain and nervous system so why sit back and be dictated to? You can go old skool and write them a letter but it is less likely to get past the secretaries.



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