Not the same level of rare, but my main condition is diagnosed as "connective tissue disease - unspecified". I've only ever met one other person with this diagnosis.
this post was submitted on 28 Jun 2023
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My wife has hashimotos which is not that rare but I honestly think there is something more to it. She has had issues with all her limbs and tumors and it makes me think her system is fighting itself more than just in the thyroid.
Mine isn't as rare but I've never met anyone else in real life who has it. And for 26 years straight I suffered it and saw multiple specialists, none of which ever even considered or knew about my actual illness. I have cyclic vomiting syndrome.
I have visual snow syndrome, it’s a migraine-adjacent disorder that wasn’t really studied until a few years ago. It’s so-called because it makes your vision look like a snowy old-fashioned TV but it also screws with your perception more generally causing tinnitus, light sensitivity, derealisation, and in my case a 24/7 headache nothing short of cannabis will get rid of!
It was barely known to neurology when I got it but I was eventually diagnosed by a migraine specialist.