i had a moment on a work call last week where the words just wouldn’t come. not the fog that sleep fixes, but like the actual word was missing from my vocabulary. it frightened me enough to start logging when these moments happen - what time of day, whether heat’s involved, if it’s one word or whole sentences, how it connects to my fatigue patterns. the problem is there’s no number for it.
you can’t point to an EDSS score or an MRI result in your appointment and say “look, this is progression.” just a log that could mean everything or nothing at all. i brought it up with my neuro and got a fairly dismissive “keep an eye on it” - which doesn’t tell me if i’m tracking the right things. part of me thinks i should have brought something more concrete to show them. part of me wonders if they’d even change my DMT unless it became severe enough to be undeniable.
that thought is what actually frightens me. does anyone else track cognitive changes between appointments? what did you show your doctor and did it actually change anything?