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
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.