Body temp out of control!! xx

New diagnosis and before diagnosis
1

Hi All x

I’m having big problems with my body temperature control!!

About 3 years ago (when my other MS like symptoms first started) I basically just stopped feeling/sensing the cold. During last year’s severe drops in temperature I was literally sitting on my sofa in my nightie with the patio doors wide open and icicles hanging on the frame!! My family were going mad because I couldn’t stand - and still can’t stand - the heating on in the house. They are freezing while I am boiling hot. I can’t bear the heating on in the car or the duvet over me at night. It’s wierd but the only bits that sometimes feel freezing cold is my foot and my hand!!!

The hot weather makes me feel so ill - my last 2 trips abroad - to Cuba & Egypt 3 years ago were spent with me ill practically the whole time and I was ill for a few weeks afterwards too. The recent warm weather had me hiding in the house trying to stay cool. When I ask my hubby to feel my head he always says it’s cool and when I take my temperature it’s consistently low - 36 ish

It’s waking me up a lot at night and as it’s been so constant for so long during the day I feel totally exhausted by it - it’s definitely contributing to this awful fatigue x

Up until recently I have been absolutely convinced I am menopausal and have kept on nagging my GP to do blood tests again & again - each time my hormone levels have been perfectly normal and consistent. The Hemotologist I was under also emphatically denied I was menopausal - they also both say that what I am describing does not fit with the hot ‘flashes’ typical of menopause.

I know that the ‘control centre’ for regulating body temp is in the hypothalamus just above the Pituitary Gland - and as my brain scan showed the Pituitary gland to be enlaged I’m wondering if this could explain this freaky body temp symptom?

Could there be a lesion there that the MRI missed?

Does anyone else get it like this??? xxx

xxx jen xxxxx

2

Now I put the temp control problems down to my age.I dont feel the cold like others,while they are all wrapped up I would rather wear a T-shirt.The summer warm weather is terrible for me.It hurts my eyes and the heat just makes my symptoms worse.

I would personaly ask your doctor…

3

Hi Jen

Yes, I have probs with my temperature. I hate it too hot. In the winter time, if I go to someone’s house, I’ve been known to ask them if they could turn the heating off, or could I please sit by an open door, as I feel so unwell with heat. (Bit of a cheek really in someone else’s home, lol!)

A while ago, I wasn’t feeling too well, and thought I may have a fever, so took my temperature and found it to be just 35 degr (2 degr below normal), even 'though I didn’t feel cold at all!

Weird isn’t it? I can certainly empathise with you.

Bren x

4

Hi both x sorry you have to cope with this horrible symptom too - on top of all the others I find it’s the most daunting xxx

I can’t even stand normal/just cool or even slightly warm temperatures - it make me feel sick and dizzy and ill to be honest.

I only feel remotely ok in the frosty/freezing weather!!! but even then my body thinks it’s boiling hot and the pains in my feet and torso get to be unbearable

It’s probably one of the worst things I’m dealing with because it’s so constant and so totally exhausting.

I know that the other symptoms like the pain, the horrible stiffness come and go after a few days or weeks but this is incessant - it asn’t let up at all over the last 3 years - I really feel like it’s the one thing that’s going to finish me off to be honest xxxx

5

This may be a bit of a waffle as I’m speculating and not organising my thoughts as I go!

The autonomic system is also important in temperature control, but if your own temperature isn’t changing, then perhaps it is neither that nor the hypothalamus, but instead how symptoms caused by a separate condition are affected by heat? For example, a lot of MSers struggle with heat (last summer I virtually went into hibernation - wearing a lightweight silk dressing gown, keeping the curtains closed and the air con unit on full blast).

Saying that, having problems in normal temperatures is more unusual. The pituitary and the hypothalamus are very close so perhaps the enlarged pituitary is causing pressure on the hypothalamus?

The hypothalamus is actually reasonably large, so I would be surprised that a lesion would be missed there (unless it was very small), but it is also an incredibly important brain structure that controls masses of functions. If there was a lesion on the hypothalamus, I would expect there to be an awful lot more symptoms.

Sorry, this probably isn’t very helpful at all!!!

Body temperature is really important: a 1 degree change for only 24 hours can actually be dangerous, especially in susceptible people. So the fact that your temperature is consistent, even if it doesn’t feel it(!), is probably good news at least! I would still want it checked out if I were you though. Have you told your neuro?

Karen x

6

Hi Karen x as always thank you for your input/thoughts xxxx

Bear with me! I’m just trying to unravel things - separate things out - I have so many things going on that are making my life so miserable it’s hard to seperate them out in my head and try to look at things a bit more objectively - identify what is causing me the most trouble and what is just irritating! It doesn’t help that things can change over the weeks but there are constants and if I seperate the symptoms out into categories they seem a bit more clear!

Last night I woke up several times boiling hot - I had a cramp in the back of my left lower leg, burning in the front of my thigh and a deep/sharp ‘nervy’ pain pulsing down the outside of the thigh and pins & needles in my hand (not the side I was lying on).

The eye twitching & spasming was also back - I thought I’d got rid of that after 2 months of it driving me nuts!

This morning I woke up at 6.00am with the usual ‘ironing board up my pj’s’ feeling - my legs and whole back were so stiff and rigid - I can’t bend my ankles/feet to walk to the bathroom - my lower legs and feet are painful/aching - under the ball of my right foot hurts.

It’s now 8.00am & I’m sitting on the sofa enjoying my coffee with the patio door wide open not feeling the cold at all (apart from my right hand feels freezing). The stiffness has eased off enough to get around the house but the burning and numb feeling in my thighs is constant and the ‘nervy’ pain in my outer thigh is coming and going.

Round my middle is stiff and uncomfortable and I have a dull pain between my shoulder blades. My eye is twitching a little bit but the ‘lava lamp’ lights to the left of my vision are as usual there. I have the ‘cold water’ sensation running up my scalp and a patch really hurts to touch.

I’ll probably do some pottering around this morning but by 1 or 2 pm I know I’ll hit the wall & be back in bed for 4-6 hours sleep. Then I’ll be back on my sofa late afternoon with a bit more pottering then be back in bed by 9.30pm for another round!!!

Such has been my life for the past 7 weeks off work - very few days are better - many are worse. My mind tells me to get up and out and at it but I just can’t do it! I don’t have the strength, stamina or ability to fight through these symptoms.

I suppose the fatigue, heat intolerance, stiffness and aching, pains in the feet are the mosed disabling at the moment.

The pins & needles, numbness, twitching, flashing lights in eye etc don’t hurt so are tolerable.

The shooting pains and cramps stop me in my tracks but they come & go so are tolerable.

However put them all together and I’m totally stumped and it’s like a vicious circle as coping with them all is exhausting and so adds to the horrible fatigue!!

I haven’t seen the neuro yet which is why I’m trying to pin things down, identify & separate things out and find the best way of describing them so he understands. I am also trying to give him a timescale and of course there are the symptoms that come with a vengeance and put me in bed for several weeks - like the MS Hug type thing I get.

If I go back to the body temp thing I can split it into:

  1. My body is not sensing the cold at all - apart from in my hand and someties my foot

  2. I can’t tolerate the heat and it makes my symptoms worse - eg the hot weather last week, the heating on, hot baths

  3. I’m definitely having a type of ‘flushing’ going on throughout the day and at night - sometimes it’s a hot sweaty type flush of my upper body - other times it’s a dry burning type flush all over my body - sometimes it’s a hot then cold & clammy type flush

It’s all a bit nuts - I feel nuts - but I think it’s important I do this ‘analysis’ as I agree with my GP & the two consultants I saw last year that there is more than one thing going on with me!

It’s unravelling things & finding out exactly what is causing what that’s the problem!

As I said please bear with me - your input is invaluable!!! xxxxjenxxxxx

7

Hello, Jen

Yes, it does sound like you have more than “one thing wrong with you”, and nailing these down could be important to aid the task of finding out where the problem really is.

Autonomic Nervous System (see Karen’s reply, above) - this does regulate a lot of things like body temperature. If your temp is actually stable, then it probably is not the ANS.

Some people react very quickly to a perceived change in temperature. My wife can go from normal, to “OMG, its too hot” in seconds. Stepping outside into cold air, and she is back to normal in 2/3 minutes. Note that the response varies in direction. She does not have MS, but a different neurological condition. She has also reported the “running cold water” sensation - but down one leg. Her GP did not know anything about this. Our youngest daughter (mental trained nurse with a lot of current geriatric experience) has only ever met one other case.

A lot - but not all - of the people with MS cannot tolerate high temperatures.

The stiff feet/ankles in the morning. This sounds like the nervous system from brain to muscles, and could (yes, just possibly could) be a precursor to “dropped foot”. Does this work both ways? What I mean is (for example) do you have trouble lifting one foot off the ground by bending a knee, but have no trouble straightening that same leg?

Put just these few bits together, and it sounds like your sensory system is not good, and the neural transmission in some parts of your body is not good.

Anecdote: at the onset of my own symptoms (pins and needles/numbness spreading from feet to armpits in a matter of two weeks) I could not tell how fast I was driving round a corner - because I could not sense the pressure on my side from my car-seat. It brought home to me how much I had relied on that little bit of sensory data. The condition only lasted for a week or so.

You could try making a list. Put the major problem areas down - and then write all the bits that seem to be related. Like, for example, do the eyesight problems vary if the ambient light is bright or dull. If you can group the “small” problems together, they may point to just a few big ones - and make it easier for the neuros to check these out. And, it will help you with the task of understanding your own condition.

Geoff

1 Like
8

Sorry, I can’t remember: have you seen an endocrine specialist? The enlarged pituitary could certainly explain some of your symptoms because of changes in hormone production and, if it’s pressing on the optic nerve, your vision too, but I can’t work out how it could cause them all! The pituitary also releases hormones that control other important bits too though, so perhaps it’s a knock on effect? And, of course, it might all make sense if they can work out what caused the enlarged pituitary in the first place?

The heat thing could be the pituitary I think. The hypothalamus is the temperature regulator, but it does this at least partially by instructing the pituitary to tell other systems what to do. So your hypothalamus may be sending out the right signals, but the pituitary may not be listening / responding properly?

I honestly think it might be better to stop looking for answers before you see the neuro - too confusing and stressful (which isn’t good)! I would just tell him/her that so far the consultants think that there is more than one thing going on because your symptoms are confusing and then tell him what you said in that last post about the disabling, annoying but not painful and annoying and painful symptoms. Then let him/her work it out! (It might be a bit of a relief to just let go too - a bit like someone who’s scared of flying learning to trust the pilot: they know what they’re doing, I don’t, I’ll just forget about it and let them do their job. OK, not the best of analogies!!)

Kx

9

Hi Jen

It certainly does sound like more than one thing particularly if your pituatary is enlarged and pressing on the hypothalmos.

I get heat sensitivity- it was one of the first things I noticed and still causes a temporary flare up in numbness and pins and needles when I come out the bath - I turn into butter fingers.

Strangely though as well as this I now can’t sleep with my head under the covers (I’ve done this since forever) since the start of everything in oct and I think this is due to heat too.

I get over hot very quickly - my face and head get this crawly itchy feeling which I never had before all this. My temprature sense in my mouth has also gone wack - I can drink hot drinks almost as they’ve been made and won’t think they’re hot until I feel them burning my throat.

My hands and feet always seem to be cold lately but I never feel that they are - it’s only when my partner says you’re freezing.

Strange huh?

I guess as Karen’s said maybe wait to see the neuro to get an idea of what’s happening rather than trying to self-diagnose. I can understand it must be really annoying though

Reemz

X

10

Thanks guys for taking the time to reply!

Karen I’m waiting to see the endocrinologist - the haemotologist referred me last year but the letter got ‘lost’ (!!) As mentioned in other posts I found out my biological father had addison’s disease and an autoimmune disorder (I never found out exactly what) and he died from a pituitary tumour causing a massive stroke. Since the brain scan showed the frontal lobe lesions and this enlarged pituitary gland I’ve got an edocrinologist appointment now in 3 weeks.

Geoff - I have had dropped foot many times in the past - for weeks on end I’d find myself tripping up steps, catching my foot on rubber floors etc - I have always put it down to the after effects of an RTA I had 16 years ago when I injured my lumbar, thoracic and cervical spine (multiple disc prolapses and a subluxation fracture in the neck).

It was the L4/L5/S1 prolapses that caused me the most disabilty for several years after the accident. To be honest It worries me that I haven’t had an MRI of that area for 10 years - so wonder if it could explain a lot of my symptoms - but of course wouldn’t explain them all. Also the spinal surgeon I saw before Christmas insists it’s not ‘structural’ but thinks it’s the nerves themselves - probably demyelation - although he only saw my more recent thoracic MRI.

It’s funny but I remember the neuro surgeon I was under at that time for my spinal injuries ordered nerve conduction tests (abnormal in left leg) and an EEG as he wasn’t happy with my reflexes and numbness - but apart from an unusual ‘wave’ near where epilepsy shows up nothing else I don’t think was untoward.

Karen - it’s not the neuro I don’t trust it’s me!! lol - On the one hand I don’t want to overwhelm him with the chaos that is me at the moment but on the other hand I don’t want to miss out something important!

You are right about over-analysing & getting stressed about it all - stuck on this sofa day in day out doesn’t help at all - too much time on my hands!!

xxxjenxxxxx