I suppose this is mostly for other people stuck in limbo, although I'd be curious to hear from people who have gotten diagnosed as well.
I'm thinking not just of things like blood tests and MRIs, but also of tests people have mentioned their doctors doing during office visits.
I guess for me, it's noticing that there are a lot of things that seem as though they'd show something wrong with me that just haven't been done. When I mention the numb spots, for instance, my neurologist taps the middle of my palm--one of the few spots that is consistently *NOT* numb--and ignores things like my finger tips (the most annoying numb spots because I need sensation at the ends of my fingers to do anything requiring fine motor coordination).
And it wasn't until I'd been seeing doctors and complaining about feeling like my brain wasn't working for at least 12 years that a doctor thought to send me in for a neuropsychological assessment (which determined that yes, I appear to have deficits from what I should have... but because there was no baseline of my own normal, there's no way to be sure how much was lost).
I really want to figure out what I have, in the hope that figuring it out will mean I can slow down how sick I'm getting. Okay, sure, my issues have built up over the course of 15 years (counting from when I first started losing balance and gaining fatigue) or 18 years (counting from the first bout of double vision). So it's not like there's been a *rapid* decline. But if there's something that can reduce the decline or (really hopeful) reverse it, I want that.
I'm thinking not just of things like blood tests and MRIs, but also of tests people have mentioned their doctors doing during office visits.
I guess for me, it's noticing that there are a lot of things that seem as though they'd show something wrong with me that just haven't been done. When I mention the numb spots, for instance, my neurologist taps the middle of my palm--one of the few spots that is consistently *NOT* numb--and ignores things like my finger tips (the most annoying numb spots because I need sensation at the ends of my fingers to do anything requiring fine motor coordination).
And it wasn't until I'd been seeing doctors and complaining about feeling like my brain wasn't working for at least 12 years that a doctor thought to send me in for a neuropsychological assessment (which determined that yes, I appear to have deficits from what I should have... but because there was no baseline of my own normal, there's no way to be sure how much was lost).
I really want to figure out what I have, in the hope that figuring it out will mean I can slow down how sick I'm getting. Okay, sure, my issues have built up over the course of 15 years (counting from when I first started losing balance and gaining fatigue) or 18 years (counting from the first bout of double vision). So it's not like there's been a *rapid* decline. But if there's something that can reduce the decline or (really hopeful) reverse it, I want that.
Comment