this post was submitted on 04 Jul 2023
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Welcome! Glad to have you here. I I hope it stays stable for a long time. I have Huntington's Disease and (Lupus??) It depends on who you ask. My neurologist and PCP said yes, rheumatologist said no. So I get no treatment for it but to try and exercise as tolerated. I have great pain management doctors but I'd rather treat a cause than a symptom, ya know?
That sucks. Why does the rheumatologist get to overrule the neurologist? Isn't Lupus in the neurologist's domain?
Yes I'm hoping that everything stays stable. I have some aphasia, but no other symptoms. Hopefully a few word mix ups is all I ever have to deal with.
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.