That’s the truth, about specialists fighting for priority. From what I’ve seen, they’ve carved up the pie of various complex issues into discrete, siloed specializations, and have difficulty saying those three simple little words, “I don’t know.”
My partner’s Alzheimer’s is intertwined with anxiety and depression. For a long time, docs insisted “it cannot, not, NOT be Alzheimer’s,” because, you know, they weren’t neurologists. We probably lost valuable time over their stubbornness. Gee, you think someone who knows their brain is no longer firing on all cylinders won’t be depressed & anxious? /s
Yes, I’ve learned from the past 6 years of my life that “I’m sorry this is happening to you” means “This is potentially really bad but I don’t know the answer”. I got pretty sick of hearing that.
Yup, right on up there with “it is what it is.” I REALLY wish some of these confounded eggheads would just say “I don’t know.” However, it’s always a pleasure to watch their eyes bug out when I walk in using proper medical terminology. 😈 And then, since I’ve got my PhD (literature, which I know doesn’t go very far, but still), when they ask “is it Mrs. or Ms.,” I look 'em in the eye and say “It’s Dr., but you can call me 108.”
It’s unfortunately, but you have to be your own advocate. I do a lot of internet research for both me and my child. I spent 2 years listening to doctors tell me nothing was wrong with my child despite all the evidence I presented. It’s only by luck I got her into a trial where they had to test her and wouldn’t you know, she’s got ASD. For my MS I was very lucky. I was referred out to a neurologist who thought an MS specialist would find me fascinating. And he did. I have a very odd presentation of MS. Also for my demographic I’m a unicorn. I’m 100% healthy aside from the MS. Apparently, so many people in my demographic suffer from diabetes, etc that they basically can’t get trials going. I just know my doctor is waiting to ask me to join a trial lol. I wouldn’t say he’s hoping I fail my current meds so he can put me on something experimental, but he wouldn’t be sad.
I was a really good candidate for the Huntington’s trials they were doing near me, too. Presymptomatic with a symptomatic mom that I could bring along.They were practically drooling while talking to me about it, but unfortunately it was too far to travel once a week. The trial ended up being cancelled so it didn’t matter. It’s nice when the doctor’s are fascinated by your condition.
That’s the truth, about specialists fighting for priority. From what I’ve seen, they’ve carved up the pie of various complex issues into discrete, siloed specializations, and have difficulty saying those three simple little words, “I don’t know.”
My partner’s Alzheimer’s is intertwined with anxiety and depression. For a long time, docs insisted “it cannot, not, NOT be Alzheimer’s,” because, you know, they weren’t neurologists. We probably lost valuable time over their stubbornness. Gee, you think someone who knows their brain is no longer firing on all cylinders won’t be depressed & anxious? /s
Yes, I’ve learned from the past 6 years of my life that “I’m sorry this is happening to you” means “This is potentially really bad but I don’t know the answer”. I got pretty sick of hearing that.
Yup, right on up there with “it is what it is.” I REALLY wish some of these confounded eggheads would just say “I don’t know.” However, it’s always a pleasure to watch their eyes bug out when I walk in using proper medical terminology. 😈 And then, since I’ve got my PhD (literature, which I know doesn’t go very far, but still), when they ask “is it Mrs. or Ms.,” I look 'em in the eye and say “It’s Dr., but you can call me 108.”
Perfect answer.
It’s unfortunately, but you have to be your own advocate. I do a lot of internet research for both me and my child. I spent 2 years listening to doctors tell me nothing was wrong with my child despite all the evidence I presented. It’s only by luck I got her into a trial where they had to test her and wouldn’t you know, she’s got ASD. For my MS I was very lucky. I was referred out to a neurologist who thought an MS specialist would find me fascinating. And he did. I have a very odd presentation of MS. Also for my demographic I’m a unicorn. I’m 100% healthy aside from the MS. Apparently, so many people in my demographic suffer from diabetes, etc that they basically can’t get trials going. I just know my doctor is waiting to ask me to join a trial lol. I wouldn’t say he’s hoping I fail my current meds so he can put me on something experimental, but he wouldn’t be sad.
I was a really good candidate for the Huntington’s trials they were doing near me, too. Presymptomatic with a symptomatic mom that I could bring along.They were practically drooling while talking to me about it, but unfortunately it was too far to travel once a week. The trial ended up being cancelled so it didn’t matter. It’s nice when the doctor’s are fascinated by your condition.