this post was submitted on 04 Jul 2023
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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.