I'm 19, from Norway, and I was, probably, born with PKD, as it was first noticed in me when I started walking by my grandmother. At least that's what I've been told. I get spasms in every muscle on the right side of my body, especially if I'm stressed, both physically and mentally. As a kid, I could never run, as I would end up with seizures and get exhausted from them. I don't know if everyone gets that exhausted, but I do. Whenever I've had them, it's worse than a super intense trip to the gym. Nothing else can make me that exhausted. I could wok out till I almost throw up, but even then I've got more energy left over.
But then again, epilepsy patients also experience this exhaustion so I've always assumed it's normal.
In my case it wasn't familial, so I was treated for epilepsy until I was almost 14, and they kept looking for it, putting me on medication, but if they even worked, the side effect were too big of a deal to handle.
Earlier this year I was finally put on medication that works with only a slight constant weight gain (which kinda sucks, to be quite honest, as some medication I was on as a kid completely stopped my metabolism and it never really returned to its fully functioning state) and they don't work 100%, but I'd say about 70%. Better than nothing, I guess.
Christin, if you ever want to talk to someone about living with PKD, feel free to shoot me a message. I've been through most of what can come to you when it comes to it. People not accepting you because you're different, people being scared, having to make certain sacrifices because of things you can't do, etc.