I find my current neurologist frustrating, mostly because I like a lot of information, and she seems convinced that I am somehow better off knowing little and taking her word for things. I do not get that.
FYI: I am just ranting here, because I suspect others have similarly frustrating experiences.
Anyway. I recently went and had yet another MRI done (which, for me, means taking meds that make me sleepy, STILL having about an hour's worth of awful claustrophobic panic, a generally crappy day, and a hefty copay).
So I go a couple weeks later, see neuro, and she tells me about all 3 of the new little baby lesions in my brain. Awesome. Apparently they could grow up to screw with cognition, but then again, they may not. Very helpful science.
Now, I started copaxone a few months ago (so my understanding is it starts actually working now-ish), and don't have any new symptoms, so I would be disinclined to be interested, but apparently this is information people need.
WHY. I asked. No good response.
Here is my reasoning: whether or not I have some new lesions seems to say little about the efficacy of medication: it only reduces progression by 30% if I'm lucky, and no one can know how fast I was/will be progressing, so WHAT can an MRI be telling my neuro? Even if tomorrow I have 30 new ("silent" or not) lesions, what if without meds I'd have 90? It also apparently doesn't help warn me of upcoming symptoms, because really, they might do nothing, or I could have a big sucker of a lesion grow tomorrow on my spine and jack me up all kinds of ways. So really, I get to be marginally freaked out without any actual facts. My favorite.
I got the stupidest answer ever.
"Well we should keep track and if you have more we will switch your medication." What? No.
"WE" don't make decisions like that; I do. "WE" can discuss my medication: I make decisions. Hello, autonomous adulthood.
I do not care / will not care whether my neurologist wants to keep track of my lesions and their growth if/until someone (preferably the, you know, doctor who treats me) could explain the efficacy of this irritating process.
Kind of like how I don't care how much I weigh until I need to buy different pants.
Time for a new neuro. Anyone know someone who actually is willing to have non monosyllabic conversations with their patients in NYC?
FYI: I am just ranting here, because I suspect others have similarly frustrating experiences.
Anyway. I recently went and had yet another MRI done (which, for me, means taking meds that make me sleepy, STILL having about an hour's worth of awful claustrophobic panic, a generally crappy day, and a hefty copay).
So I go a couple weeks later, see neuro, and she tells me about all 3 of the new little baby lesions in my brain. Awesome. Apparently they could grow up to screw with cognition, but then again, they may not. Very helpful science.
Now, I started copaxone a few months ago (so my understanding is it starts actually working now-ish), and don't have any new symptoms, so I would be disinclined to be interested, but apparently this is information people need.
WHY. I asked. No good response.
Here is my reasoning: whether or not I have some new lesions seems to say little about the efficacy of medication: it only reduces progression by 30% if I'm lucky, and no one can know how fast I was/will be progressing, so WHAT can an MRI be telling my neuro? Even if tomorrow I have 30 new ("silent" or not) lesions, what if without meds I'd have 90? It also apparently doesn't help warn me of upcoming symptoms, because really, they might do nothing, or I could have a big sucker of a lesion grow tomorrow on my spine and jack me up all kinds of ways. So really, I get to be marginally freaked out without any actual facts. My favorite.
I got the stupidest answer ever.
"Well we should keep track and if you have more we will switch your medication." What? No.
"WE" don't make decisions like that; I do. "WE" can discuss my medication: I make decisions. Hello, autonomous adulthood.
I do not care / will not care whether my neurologist wants to keep track of my lesions and their growth if/until someone (preferably the, you know, doctor who treats me) could explain the efficacy of this irritating process.
Kind of like how I don't care how much I weigh until I need to buy different pants.
Time for a new neuro. Anyone know someone who actually is willing to have non monosyllabic conversations with their patients in NYC?
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