Just been reading some very interesting articles on tinternet about this subject after a morning spent trying to cool down !! Thought I’d share. Uhthoff's symptom - multiple sclerosis encyclopaedia
Oh Mrs H that’s so interesting!
I’ve had this ‘getting hot’ problem for a while… well few years actually. I get it in the evening when I’m tired and also when I’m stressed… both of those are on the list ofr Uhtohoffs!
Thanks for posting… we live and learn!
Hi Pat Wiki has a good page about it too. It’s been getting worse and worse for me, over the last few weeks…it used to happen when I had a bath or shower but nowadays it’s the slightest little thing and even eating now, makes me absolutely boiling hot to the point that I have to get changed and my hair is soaked. Xx
I even get it when I’m concentrating or excited… I go to a little bingo group once a week and I always get it there! It’s become a joke… ‘Pat’s having a hot flush again’! But I’m well over menopause. Also when I get it I get a feeling of pins being stuck in my back… not like pins and needles, but big pins in different areas.
I’ll check the Wiki info.
Thanks… I’ve been wondering about this for such a long time… nice to have a name for it!
I hate temperature extremes. Heat sends my sensory symptoms nuts and utterly exhausts me to the extent that i basically become a hermit in the summer, staying indoors, curtains closed, aircon unit on full blast. Increased body heat (from overdoing exercise - a dim memory!) gives me blurred vision and oscillopsia. Cold is unbearably painful though. I long to find somewhere to live where the temperature is min 10 and max 23/24! Karen x
I researched this because I am slightly freaking out about this dull ache in my forehead along with a frozen feeling around my eyes combined with this searing inner heat. And this morning my eyesight is kinda blurry, like there’s water in them. It’s been going on for a couple of days and I’m getting kinda weirded out !! Xx
Mrs H… have you an MS nurse to contact? Or are you seeing neuro soon? Sounds awful… and I know that blurry eyesight… I’ve got it 24/7 now. A real pain in the… well in the eyes! If you still have it Monday I think you should contact MS nurse or GP.
Karen… I so agree. When I moved in here I was really hoping for a north facing flat… but once again I’m west facing and forced to live like a little mole in summer (rather a big mole actually). Cold is also unbearable, but when I’ve been cold for about half an hour I start to get boiling hot.
If you find that place of perfect temperature, let me know!
Catherine: what you describe is quite like how I feel on Rebif days when I forget my paracetamol. It’s usually that dull ache and weird feeling round my eyes that reminds me to take the paracetamol. So is there a chance it is Rebif-related? If not, it might be migraine? Best to call your MS nurse as Pat said. Fingers crossed it’s not a relapse brewing Kx
I should think it’s highly likely to be Rebif related as I’ve never had this bluriness before and the dose went up to 44 on Wednesday night. It’s nowhere near a migraine it’s just a weird, numb forehead with a funny kind of ache. My eyes seem to be struggling more than normal to stay still and focus!! It’s fine, what’ll be will be !! I’m at the hospital on Monday afternoon for the blood tests that they do when you’re on Rebif…so if one of the MS nurses are around, I’ll mention it. Xx
Hi Saw the MS nurse and yep, it’s definitely Uhthoffs syndrome. Probably linked to the fact that the latest damage is in my brain stem and just another symptom to add to the list !! She’s going to speak to the neuro about it in case he wants to see me. The best advice she could give is, don’t get stressed, over exerted, lower the temperature of baths and showers, don’t eat food when it’s very hot and buy some cooling bands, which apparantly you can get online…I’m off to check out good old amazon !! Xx
I totally agree with Karen about the temperature extremes. I cannot bear the heat in Summer or the cold in Winter. I would definitely be happy in the same range of temperatures that Karen mentioned. I have been miserable in this cold weather and am so desperate for a lovely mild Spring. It doesn’t look like it’s coming in the near future though! Teresa xx
Hi Hope this is if use for those of you suffering in the same way as I…they even do cooling scarfs !! http://www.google.co.uk/url?sa=t&rct=j&q=cooling%20bands%20uk&source=web&cd=2&ved=0CDYQFjAB&url=http%3A%2F%2Fwww.personalcooling.co.uk%2F&ei=LJVJUdwY4ofQBbyHgIgK&usg=AFQjCNHQHO0S7TW5EbvqYmLNtsiGGsWuog&bvm=bv.44011176,d.d2k Xx
Also, good old amazon do a range of pretty cooling scarves and wristbands. Xx
I totally agree about the extremeties of weather, and if you find the
place with the perfect temperature please let me know.
I have a couple of cooling scarves in a selection of colours and they are the only way I can enjoy a day out when the weather is warm. Even then I really have to pace myself as the fatigue is so much worse in heat.
Hi again, I emailed MS nurse about it. In answer she didn’t actually name Uhtoff’s Sign but she did say it’s caused by the MS, can happen after bath or shower, any physical or mental activity, stress and esp in evening when body temperature is higher.
Doesn’t seem many situations where it won’t happen… LOL…
Recommended all the usual cool things… and to wear cotton. My duvet covers are all polyester mix so I’m thinking of going for 100% cotton.
Hi Pat We changed to Egyptian cotton and that seems to make a difference at night. Xx
My lips have gone numb again at the moment and everytime I drink a hot drink they become more numb and tingle!! The joys!
Hi Reemz All around my mouth, nose, eye, cheek, forehead is numb…is yours like you’ve had an anaesthetic at the dentist and it’s the after effects a couple of hours later ?? Xx
kool ties are good, I bought a couple last summer and they were a godsend in the hot weather