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Question please

Hello

Some of you will know, I was diagnosed last year (PPMS) multiple brain lesion, lesions on my spine.

I have noticed subtle changes over the last few months.

I’ve just been saying to my husband today that even though my feet are always cold, they don’t actually feel cold in my head-if you know what I mean

I touch them-there cold. They still go through all the colour changes from white, pink purple but still don’t feel cold to me. In fact if anything! unless I touch them, they feel warm…weird

I know it’s probably the lesions/sensory. Just wondered if some of you guys experience this?

My balance and word finding skills not as good either.

Also! want to take this opportunity to say thank you to you guys for all the support you’ve given me over this last year and how many months…doesn’t time fly

I don’t have a neuro or MS nurse, so besides my lovely family and great gp you guys have been a great source of support to me. In those early months of my diagnosis, you really were a life saver. Each time I see my gp for a review, she always asks if I still use the forum-she knows how important you guys are.

Thank you

Noreen

Hi Noreen,

I have cold feet and half way up y calf, usually at night, My wife says there freezing to touch. Sometimes I haveto wear socks. I also have a freezing left hand, it gets quite confusing for people, my left is freezing my right is warm!!

We are all different in our conditions, hope this helps, Andy

Thanks Andy

Yes I understand what you’ve said ta

What I was trying to say…badly, is that I’m not aware anymore that my feet are cold, unless I touch them. I could happily leave my socks off and that’s definitely not me. Yet when I touch my feet, they are really cold to the touch-hey ho

I did have very cold feet but when they were cold, they felt freezing to me. I’m doing exercise every day now and they are warm again. However, one of my friends also has MS and her temperature is so low that a digital thermometer won’t take it - she just gets an ‘error’ reading but she never feels cold at all. I did a bit of research on temperature and MS after I saw this when we were having Tysabri together and the nurse couldn’t get a temperature for her. I found this is a rare but written about symptom of MS - from memory, it means she has a lesion on the bit of her brain that controls temperature. Could you be the same? Is your temperature abnormal or is it just that your feet are cold?

Thanks Jen

I’m relieved you understand. It’s a recent thing for me although my feet have felt numb for a long time and like I have sticky tape stuck underneath them…weird I know. You could stick pins in part of my left foot and I wouldn’t feel it.

The joys of MS

Hello Sewingchick

I assume my temperature is normal, I very rarely check it. It is interesting what you say.

I do foot exercises for my feet when on my recliner but it doesn’t make mine any warmer unfortunately.

I tend to wear clothes in layers rather than thick jumpers. I’m either too warm or too cold-never seem to have an happy medium.

Thank you x

I sometimes have one cold foot and one hot foot, it feels very strange when one touches the other I can’t tell which is hot and which is cold unless I touch them with my hand.

Happy days

Jan x

Hi Noreen,

Yep - I also have the joy of numb feet but with a permanent tingle. If I grab my foot or ankle - I feel nothing.

I have the opposite problem to you, my feet can either feel like they are burning (like now) or feel like ice but if I actually touch them they they feel at normal temperature.

We do have a wonderful array of symptoms here.

JBK

P.S. - just to cheer everyone up - a Buddhist walks up to a hot dog seller and says - make me one with everything

Thanks Jan and JBK, it’s comforting to know we’re all suffering together lol PS, enjoyed the joy x

Hi Noreen, I want to say thank you to you for your support over the last 12 months without this forumn I would be falling completely apart. Your replies are so supportive along with many others. I tried to stay off the forumn for a while and then all the changes I realised that talking about the MS on here wasn’t causing me to focus on my condition I needed this support from people that understand. I have neuro appointments every 6 months see MS nurse regularly and now feel like I have my own parking space at the GP surgery, I go to these appointments at breaking point, struggling to be able to work full time, only go out on miminmal occasions and then they write - you manage your condition very well. The MS nurse said last time there is nothing I can do to help you you seem to have a nasty form. I am on a real low tonight so new needed to come on here. Sorry to take over your thread but seemed fitting I needed the support that you are describing. I am fed up with what MS has dealt me - I am 35 can’t go to toilet myself, can’t walk unaided, need to use wheelchair 90% of time when outside house, have a medication list that looks like a shopping list. To sum this week up delivery from county services via OT a trolley which looks like it is for a granny, sorry I know they are really useful for many but it is just the association I have, already told her didn’t want one of those as when tried it I felt like I was going to fall and wasn’t appropriate for my balance issues I haven’t lost the ability to use my brain. I feel I am patronised by them all the time. Yes some of the stuff I agree will help. She then watched me go up the stairs, ooh you managed them well it was the tone of voice as though I was an idiot - I nearly snapped but remained calm until she had gone, I thought I have had to work out how to live and get about for the last 12 months if I had waited for them I would still be in bed not moving anywhere. Sorry for rant I am feeling very low and had enough of the struggle. It has all got too much yesterday felt great thought I was starting to get a grip on handling this disease and then today I feel horrific and spent most of it in bed. Sorry getting back to your point about your cold feet and you being unaware I have always had really cold feet that I am unaware off, used to be able to tell if touched them often can’t tell anymore. My legs now get this horrible purple/blue mottling daily they are fine when wake up take myself to toilet and it is appearing had it all checked out and told all OK it’s the MS. Sending you hugs Barney

Meant to say I am loving your avatars since the forum changes.

Hello Barney, how do like this avatar-cheeky or what.

I am really sad to hear you are feeling so low but reading what you’ve written I fully understand why. Things are so tough for you.

You’re a similar age to my daughter, it makes me feel very upset and frustrated for you. This disease is a real bummer.

Rather than a wheelchair, would you not prefer a mobility scooter, the travel scoot looks really dinky.

I wish I could make it all better for you Barney, it’s just not fair.

Lot’s and lot’s of ((((((hugs))))))

Noreen x

Thanks Noreen I have a mobility scooter I am just looking to see if I can get a lift fitted in my boot so I don’t have to have someone with me to use it. This avatar is good cheeky is good

Hi Noreen.

You have been a tower of strength to me too and I really appreciate your words of wisdom, along with others here too. I class many of you as friends.

Now. About the cold feet. Yes. I have had this too for the last couple of years but I feel that they are cold. Every other part of me feels warm but my feet are always cold. Really strange.

Take care sweets.

Shazzie xx

Hi, I get a really cold feeling like someone is pouring freezing water downing my back its really weird when i get an hot flush at the same time!

Hi Noreen, it’s definately an MS feeling! My feet always feel cold to me & ultra sensitive, to other people they feel normal.

Aren’t we all lucky to have such a varied list of symptoms?

Rosina x