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tempreture changes not ms says nuero

hi went to see my nuero yesterday.whilst there i complained about these bouts of feeling very very hot so hot i feel likei,m cooking other times i am freezing andno matterwhat i doi can,t get warm.nuero told me its not ms probably an underlying infection.told them that other people i know with ms suffer the same probllem ,still they said its not ms.i am interested to know if anyone esle has mentioned this symptom to their nuero and what their response was.i was left rather unhappy at the response and was made to feel i was making things up.my gp thinks its ms but my nuero won,t listen to her either.

Hi Mistymoo,

So if your neuro suspected an underlying infection, did they suggest any test/medication to address it ? If not, did they at least advise you who could try to resolve your issue ? (Your GP perhaps ?)

Dom

(…I used to have a neuro who was used to being treated like a god, and fully expected to be regarded as such by everyone. So, when I had the sheer temerity to question - politely - his opinion about something, he then behaved like a spoilt brat about everything and became reluctant to be even the slightest bit helpful. As far as I was concerned, he was then a complete waste of time and I consequently requested to be transferred immediately to a different neuro - which was arranged straight away!! The neuro I see now is so much better.)

Hi MM,

I haven’t asked about that particular problem, but I seem to be told most things I complain about aren’t MS.

The two big ones are pain and fatigue. Apparently, my joint and muscle pain can’t be caused by MS (I believe that’s wrong, and that MS does cause musculo-skeletal pain, albeit indirectly). Supposedly, my fatigue isn’t caused by MS either, but only by the drugs I’m taking for it!

My GP rolled her eyes at this, as it was clear from her notes I’d already been complaining of fatigue BEFORE I ever took any drugs. So, it doesn’t take Einstein to work out it’s not caused by the drugs.

I do seem to get hot very easily (I’m sweating after minimal exertion), but also cold very easily. But I am a woman of a certain age, so who knows if it’s just nature taking its course? Then again, I dismissed most of my symptoms for years, as being just due to my age. Bizarre as it now seems, I assumed everyone over 40 felt this rubbish, but didn’t moan about it. You have no way of knowing what’s normal for your age, because you don’t know exactly how anyone else feels.

Tina

x

i think your neuro is talking rubbish, ms can affect the hypathalmus that controls the temperature in your body,i know that my ms affects that area of my brain, because i cant stand to be too hot,if i get too hot, i cant function at all,and also if i get too cold, i then warm up,but i warm up too much,so i know that my hypathalmus doesnt work very well at all.

jaki xx

My feelings of hot and cold seem to be unconnected to the ambient temperature. I have a digital thermometer in my sitting room and can be shivering at 24 and boiled at 20. I am certain this is MS but I’ve never discussed it with my neuro. Just cope with layers.

Jane

This is known as Uthoff’s phenomenon/syndrome and is common in MS, as far as I know! Teresa xx

I have uhthoffs…as diagnosed by my NEURO who obviously does know what he’s talking about !!! It is very common in MS and worth looking at a good article on Wikipedia. Xx

Surely Uhthoff’s is just symptoms getting worse when you are hot? It doesn’t mean getting hot/cold for no reason, although I do think that’s a possible symptom of MS in its own right - problems with the hypothalamus, as Jaki said.

Tina

Hi Mistymoo

What a load of rubbish. Of course it is to do with your MS. I have UIhtoffs and it was one of my first symptoms. I remember not being able to attend meetings at work because I would get so hot, especially if there were a lot of people in the meeting

Also missed out on a lot of family functions because I would become very poorly even if the surrounds were freezing after a few minutes the Uhtoffs would start and I would have to leavI know rthat infections cause an elevation in temperature but it’t not the same.

Shazzie xxx

Honestly, what is it with these rubbish neuro consultants!? I’m sure there are some good ones out there somewhere but it seems that so many people have problems getting neuros to take them seriously. These guys should be made to walk in our shoes for a day, then they might listen!!! makes me so mad, it’s people’s lives they are messing with by not listening and doing more investigations. Sorry rant over. xx

Honestly, what is it with these rubbish neuro consultants!? I’m sure there are some good ones out there somewhere but it seems that so many people have problems getting neuros to take them seriously. These guys should be made to walk in our shoes for a day, then they might listen!!! makes me so mad, it’s people’s lives they are messing with by not listening and doing more investigations. Sorry rant over. xx

Hi, I’ve also just bought a digital thermometer for my lounge and it also shows the humidity. I thought I’d be able to see if there’s a pattern to my fatigue. So far, I can’t find a pattern. Today, the temperature is 20.5C and the humidity is 62%. Similar to yesterday, the only difference is that I 've got the French door open so there’s a breeze. Have to admit, I feel a bit chilly! I know if I sit out in the sun or am dressed too warmly then my energy gets totally zapped and I can’t do anything til I’ve cooled down. But two days that are exactly the same effect me differently, so I think other things contribute to the fatigue, eg. what I’ve eaten and how much. Digestion uses a lot of energy. Yesterday, I went out on my scooter to my son’s sports day.i was dreading it because I’m on my own during the day and thought I’d struggle, but I managed it. I think what helped is that I didn’t have much to eat til I got back. Heather

I’m the same with my body’s thermostat and being a female in my mid forties!!, my GP did blood tests for hormone activity, which all came back negative, he rightly wanted to test other possibles before assuming it was MS related. However he and my MS nurse have agreed that it is in this case down to my “lovely”… MS!!! Jools X