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    NMSS Article About Heat Intolerance

    How to cope with heat sensitivity.

    Excerpt
    The most important thing to know about summer heat is that it won’t make your MS worse. But it can make your symptoms feel worse. That’s because, according to research, raising your body temperature by even as little as half a degree can affect how your nerve impulses operate.

    “Demyelinated nerves are already not doing a normal job of conducting electricity, and heat impedes electrical transmission even more,” says Barbara Giesser, MD, a professor of neurology at UCLA.

    This can create what’s known as pseudoexacerbation—a temporary, reversible worsening of physical and cognitive MS symptoms that is caused by a known precipitant, such as heat or an infection. “You feel crummy, but it’s important to know that you’re not going to have any more nerve damage,” Dr. Giesser says. So when your body temperature returns to normal, your symptoms should revert to the level they were before you became overheated.

    http://www.momentummagazineonline.co...ature-control/

    #2
    Thanks Marco. I remind myself each morning during my walk the very same thing.

    A timely reminder as many of us deal with the heat and humidity summer can bring.
    Kathy
    DX 01/06, currently on Tysabri

    Comment


      #3
      90+ here today.

      Am I the only one who knows that it's hot out even in a cool house?

      Comment


        #4
        From the article that Marco posted:

        "Evidence suggests that heat sensitivity becomes more common as the disease progresses, but not in everyone. If you have fairly mild symptoms, you may be able to tolerate the heat better than someone with more severe symptoms, Dr. Carter says. And he points out that people who already have difficulty walking may find that their mobility worsens dramatically after as little as a few minutes in high temperatures."

        I've come to the point where if I feel comfortably warm (not uncomfortable) - then it's too warm for my nerve signals to function most effectively.

        I have to feel 'borderline chilly' in order to be able to move around and function at the best of my ability.

        It still amazes me how much better I can move around and walk, immediately after eating cold foods such as frozen blueberries with Greek yogurt.

        And conversely, it still amazes me how my ability to get up from my chair, move around, and walk worsens dramatically after eating warm foods.

        Ambient temperature, as well as core body temperature, both have an effect on my nerve signals.

        Take Care, and Keep Cool.
        PPMS for 26 years (dx 1998)
        ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

        Comment


          #5
          Originally posted by KoKo View Post
          Ambient temperature, as well as core body temperature, both have an effect on my nerve signals.
          Hi Koko... and Marco!

          Thanks for the info. I'm continuously on the lookout for people with actual experience of the exact opposite as the majority of MS members here. Those without heat issues.

          Was surprised when Koko related her heat issues.

          Ambient temp, core temp, humidity, what I ingest be it hot / spicy tacos or ice cream (20 minutes later) causes any discomfort. I use wasabi like mayo, dry mustard mixed with Guiness. I also don't sweat at all compared to pre dx.

          I actually feel a bit better after a 90 minute workout on a warm day, in a warm gym or an 82 degree exercise pool followed by a 110 degree hot tub for 10 minutes. Tired or exhausted but a bit less spastic maybe. 2-3 hours and I'm about as spastic as before sadly.

          This isn't meant to sound bragadosio. I actually got a second opinion regarding my MS dx, in part due to lack of heat issues. If heat effects electrical signals negatively... not here.

          Can anyone relate? Would like comments and apologies to Marco for a slight detour in the post. Actually considering a move to southern FL, so any input especially from anyone who was like me and then became heat intolerant.

          Jer (PPMS)

          Ps. I move like molasses in the winter months. Very painful regardless of exercise. Walking becoming a major issue.

          Comment


            #6
            Originally posted by 502E79 View Post
            Was surprised when Koko related her heat issues.
            Why surprised, Jer?

            Originally posted by 502E79 View Post
            Ps. I move like molasses in the winter months. Very painful regardless of exercise. Walking becoming a major issue.
            For me, cold causes severe spasticity, and difficulty moving my arms and legs.

            While heat causes mostly weakness (with some spasticity), also making it very difficult to move.

            Take Care
            PPMS for 26 years (dx 1998)
            ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

            Comment


              #7
              Originally posted by KoKo View Post
              Why surprised, Jer?

              I started a list of the PPMS members with the hope that I may see similarities in sx. You are one of roughly 12 people I'm aware of with PPMS. Was hoping for someone to relate to. There are the RRMS majority, step two the SPMS minority, then what remains... and of that slender group it appears most went through the stages.

              Still don't know how many arrived at PP immediately. Anyone here?

              I believe a neuro needs to script something regardless of sx. Their thinking seems to be: DMT immediately... figure it out later on. Everyone is RRMS, it's covered. Can't blame them. Their toolkit does have more tools these days. But how many versions of a hammer are enough? Sorry, that's another thread.

              Koko, I was just looking for a commonality. The best or perhaps worst, I can draw from Marco's thread is that my nerve impulses operate (at this point) with little or (scary version...) no impairment, at least related to heat.

              SO, I try to keep very hydrated regardless of rarely feeling thirsty. Play it safe.

              Jer

              Ps. Winter is very hard, but a fairly strenuous workout ("leave it out there"-Bourdeaux) helps the spasticity a bit. With heat, a bit better, for me anyhow.

              Comment


                #8
                Originally posted by 502E79 View Post
                I started a list of the PPMS members with the hope that I may see similarities in sx. You are one of roughly 12 people I'm aware of with PPMS. Was hoping for someone to relate to. There are the RRMS majority, step two the SPMS minority, then what remains... and of that slender group it appears most went through the stages.
                Originally posted by 502E79 View Post
                Koko, I was just looking for a commonality.
                Ah, got it Jer.

                Originally posted by 502E79 View Post
                I Still don't know how many arrived at PP immediately. Anyone here?
                I was dx'd PPMS from the start. My neuro referred me to the Cleveland Clinic Mellen Center for MS, for confirmation of the 'type'.

                Originally posted by 502E79 View Post
                I belie The best or perhaps worst, I can draw from Marco's thread is that my nerve impulses operate (at this point) with little or (scary version...) no impairment, at least related to heat.
                Or, perhaps your muscles are strong enough yet to overcome, or mitigate, weak nerve impulses when too warm, at this point.

                In any case, thanks for sharing your experience, Jer.

                Take Care
                PPMS for 26 years (dx 1998)
                ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                Comment


                  #9
                  Originally posted by KoKo View Post
                  I was dx'd PPMS from the start.

                  So, even with PPMS there are inexplicable components. All guesswork, sigh.

                  "Opinions... their most universal quality is diversity" - Montaigne

                  "MS... it's most universal quality is diversity" - Jer

                  Comment


                    #10
                    Originally posted by KoKo View Post
                    From the article that Marco posted:

                    "Evidence suggests that heat sensitivity becomes more common as the disease progresses, but not in everyone. If you have fairly mild symptoms, you may be able to tolerate the heat better than someone with more severe symptoms", Dr. Carter says.
                    Jer ~ or, when it comes to heat sensitivity, you're a member of the "but not in everyone" group!
                    PPMS for 26 years (dx 1998)
                    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                    Comment


                      #11
                      Originally posted by 502E79 View Post
                      I started a list of the PPMS members with the hope that I may see similarities in sx. You are one of roughly 12 people I'm aware of with PPMS. Was hoping for someone to relate to. There are the RRMS majority, step two the SPMS minority, then what remains... and of that slender group it appears most went through the stages.

                      Still don't know how many arrived at PP immediately. Anyone here?

                      I believe a neuro needs to script something regardless of sx. Their thinking seems to be: DMT immediately... figure it out later on. Everyone is RRMS, it's covered. Can't blame them. Their toolkit does have more tools these days. But how many versions of a hammer are enough? Sorry, that's another thread.

                      Koko, I was just looking for a commonality. The best or perhaps worst, I can draw from Marco's thread is that my nerve impulses operate (at this point) with little or (scary version...) no impairment, at least related to heat.

                      SO, I try to keep very hydrated regardless of rarely feeling thirsty. Play it safe.

                      Jer

                      Ps. Winter is very hard, but a fairly strenuous workout ("leave it out there"-Bourdeaux) helps the spasticity a bit. With heat, a bit better, for me anyhow.
                      Hello Jer.
                      I’m the same as you as the heat doesn’t tend to make any of my symptoms worse... or better. If I catch a chill and start to shiver then everything is worse.
                      Regarding the heat I don’t drink much water, am never thirsty and hardly ever sweat. On the other hand where I live is very cool and damp. We haven’t had over five days of over 70 degree temps so far this year. One time I was mid west and it was hot and dry and I felt a lot better. I’m certain MS affects us all similar but differently. I’m at least grateful that I’ve no issues with the heat and feel for those that do. All the best.
                      It was one agains't 2.5million toughest one we ever fought.

                      Comment


                        #12
                        I have transitioned to secondary progressive and don't do well at all in the heat! I tell people I am like a computer and have to be cold to function. The problem is I am going to visit my daughter and her family in Italy in two weeks and Europe is having a heat wave! AC is very rare over their so I am bringing extra cooling towels to use in hopes of staying cool. This is also my first time flying with my AFO and cane and of course I have to have my glatopa shots chilled and a BIG bag of pills! I hope the traveling goes smoothly but I know it will all be worth it for a month in Italy!

                        Comment


                          #13
                          I know everything out there says heat causes pseudo exacerbations which is a temporary worsening of symptoms. Once you cool down symptoms return to what is normal for you.

                          My experience has been different. All of my exacerbations have started in summer, usually needing to see my Neurologist in August for an exacerbation. So, what would initially be considered a pseudo exacerbation due to heat actually became a true exacerbation.

                          I became heat intolerant at around the age of 16. I would lay out in the sun and be out for about 5 minutes and would need to come in to sleep. Then I started to notice I would be okay if I just cooled down and did not need to sleep.

                          In these later years I am sill heat intolerant. Heat will still make me sleepy, my legs don't want to work, and needing a nap after being out in warm temperatures is still needed. I am also cold intolerant. Cool or cold temperatures causes more spasticity (stiff/tight legs) and I have a horrible time getting warm.

                          I can no longer tell if I am truly hot or cold. I will be freezing and my husband tells me my skin is really hot.
                          Diagnosed 1984
                          “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

                          Comment


                            #14
                            Originally posted by MS TOO View Post
                            I have transitioned to secondary progressive and don't do well at all in the heat! I tell people I am like a computer and have to be cold to function. The problem is I am going to visit my daughter and her family in Italy in two weeks and Europe is having a heat wave! AC is very rare over their so I am bringing extra cooling towels to use in hopes of staying cool. This is also my first time flying with my AFO and cane and of course I have to have my glatopa shots chilled and a BIG bag of pills! I hope the traveling goes smoothly but I know it will all be worth it for a month in Italy!
                            Lots of luck. Hope you have a fantastic trip to Italy and a great visit with your daughter. You may want to bring an umbrella for some shade. I never thought I would do that, but I have a few times. It beats having the sun right on me and helps minimize the heat sensitivity. I have a fun graphic one - figure if people are going to stare at me like an oddball, might as well be something great to look at!
                            Kathy
                            DX 01/06, currently on Tysabri

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