[inspiral]

Hi guys, my names Christin. I'm a 16 year old with PKD that was diagnosed 5 days ago. I have had the disorder since I was 13. I experience involuntary movements/spasms in both arms, and legs, and some sort of paralysis (?) in my brain. These occur when I make sudden movements (Say, immediately walking after being seated for a while, or walking straight after the lights turned green) or if I'm scared, startled or taken off guard. In most cases I get a 'feeling' that warns me about a episode, sometimes tensing my body or moving my limbs can stop it.

Not much is known about PKD, It's a very rare disorder, I'm one of the 50% that did not inherit the disorder from my family. I believe I have a dysfunctional gene of some sort, but doctors aren't sure. A drug that is usually for patients with Epilepsy has been prescribed, there is no cure specially designed for PKD.
I want to see if I can meet people like me who have this disorder, or people who have movement deficiencies or rare disorder.

So yeah, that's my story, what's yours?

[Bex1]

Hi there,

My 2 1/2 yearold daughter has just been given a preliminary diagnosis of PKD too. We also have no known family history of this. She has been put onto Tegretol, which has helped alot, that is why she they think this is her diagnosis. It seems to only affect one leg, and usually only when she is doing something fast or sudden or gets a fright. We live in New Zealand.

[Intoxication]

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.

[sandy_51089]

I am a 24 yr old from michigan. I was diagnosed at age 16 after showing digns at age 13. I also did not inherit it from my family. It took a few years because my primary doctor thought it was "all in my head". Finally my doctor sent me to a neurologist who kind of specialized in PKD. My symptoms would show up if I stood suddenly or was stressed. I started taking trileptal and it worked well but after I wanted to get pregnant I stopped. Well, 2 years later, I am not keeping it under control without the meds but want to take something that has little to no birth defects

[irenea]

Hey guys, I apparently have this too and it seems to me that there are very few webpages for it. I mean it almost has its own two paragraph wikipedia page under a different, but close enough, name... Anyway, since there's like 0% chance of ever meeting someone else with this I'm coming here and not really expecting any replies since I'm nearly 2 years late. I'm 17 Message me

[sjhey]

Hey Christin,

This is almost two years late, but thank you for writing about your experience. I was just diagnosed with PKD yesterday, and when I read your account, I felt like I know exactly what you're talking about, because it's really similar to my own experiences as well.

[Ktsarkozi1]

Originally Posted by sandy_51089

I am a 24 yr old from michigan. I was diagnosed at age 16 after showing digns at age 13. I also did not inherit it from my family. It took a few years because my primary doctor thought it was "all in my head". Finally my doctor sent me to a neurologist who kind of specialized in PKD. My symptoms would show up if I stood suddenly or was stressed. I started taking trileptal and it worked well but after I wanted to get pregnant I stopped. Well, 2 years later, I am not keeping it under control without the meds but want to take something that has little to no birth defects

I just found this forum and I am also diagnosed with PKD.. I seem to have more episodes in the winter but recently I have been feeling like my symptoms arnt manageable on the dose of carbamazepine that I am currently on. I am a 33 yr old female and felt comfort knowing someone could relate.

[chiara]

Hey, hi! My name is Chiara, I'm from Italy, (31yo) and I just found out about this forum thanks to ChatGPT.

I guess I'm 10 years late to get a reply but I'd still like to share my story:

My parents noticed something was off with my coordination and balance when I started standing up. I went to several specialists throughout many years, and I was finally diagnosed with PKD around 13.

I was treated with carbamazepine (and other drugs before that) for many years until I had to stop for medical exams and side effects.

In my experience, puberty and teenage years have been the worst time: I used to have many episodes per day, long and intense. I was still in the trial and error phase with the doctors, diagnoses, and treatment, which didn't help.

After uni, it got better (more sporadic and less intense episodes). It became more manageable, even if with the limitations of the condition.

I'm now in my 30s and I still get a few light episodes per day (usually in the morning) with swings based on the menstrual period, weather, stress and other triggers. I switched to caffeine tablets (after side effects from carbamazepine and a conversation with my neurologist) and it has the same benefits and make the days manageable.

So yeah… this was my bit, I guess. It is nice to see that other people know what it's like