so this is uhthoff’s phenomenon. heat slows down nerve conduction in areas that already have demyelination - you lose the insulation, and everything runs slower when it’s hot. for those of us with lesions in the spine or motor areas, it’s the difference b/w “rough day” and “can’t work.” i’m a delivery driver in toledo. summers are the worst.
my foot drop gets noticeably worse, spasticity ramps up, and the fatigue hits completely different - not just tired, but heavy, like my legs are working through molasses. a friend with optic neuritis reported her visual pseudo-flares came back hard in july even though they stopped two years ago. it’s real. what helps: air conditioning b/w stops, early morning routes if possible, cold water on ur wrists and neck, staying hydrated way more than you’d think.
sounds stupid but it matters. tracking the pattern so i can show my neuro “here’s summer vs. other months” has been useful - turns it from a complaint into actual data. and here’s the thing: if you’re on ocrevus, kesimpta, or whatever dmt, heat sensitivity doesn’t go away.
it’s not a disease activity thing, it’s a lesion thing. what’s heat doing to you specifically? wondering if it hits everyone the same or if it depends on where your lesions are.