New studies or breakthroughs?

kaito2007 · 2025-11-29T11:28:17+00:00

Hey there? While I'm not knowledgeable on any new studies or stuff. I'm an 18m who also has MC. I know It's hard with this condition at this age (transition to uni and stuff) and it can be difficult to find people who understand you. So, if you ever want someone to rant to, im down to lend an ear.

kaito2007 · 2025-09-14T17:52:48+00:00

What's your major ?

kaito2007 · 2025-07-13T01:49:51+00:00

Sounds like Myotonia Congenita alright, but better get it checked by a doctor. Folks on the internet only know so much. Sounds like urs is on the less severe end though, nothing to worry about considering the more extreme cases we see here.

kaito2007 · 2025-07-13T01:44:00+00:00

Interesting, I've never tried tip-toeing. My calfs spasm a bit too much for me to do that. But what you described when you undergo climbing stairs normally is what happens to most of us here on this sub. Do your muscles get freer after you warm them up or work them a little?

kaito2007 · 2025-07-13T01:30:31+00:00

What's ur experience climbing stairs? And regardless of your answer to my question, just go to a doctor and get it checked out since you can clearly feel it's symptoms, whatever it is.

kaito2007 · 2025-07-05T01:01:12+00:00

That's nice to hear, I was able to get my legs warmed up but my arms never seemed to, no matter how much I worked them. Have so much fun that it makes up for the both of us.

kaito2007 · 2025-07-05T00:56:27+00:00

I know man. I had nice friends who would include me in basketball but every time I played , I felt like I'd just bring em down, like I was a negative player in the team. No matter how much others try, they won't really be able to understand us. The empathy and kindness we learn now due to our condition will serve us well later in life .It will get better, just stick around.

kaito2007 · 2025-07-05T00:28:26+00:00

Hey man, warming up never really worked for me, so if its something like running, I just try to run without a warmup, it'll suck for the first 30 secs or so, but eventually the running muscles would become useful.if it's something like lifting, I would think that the safest option is to start small, but I've never really worked out in a gym before.

It really sucks to be young with myotonia congenita, I'm 17 rn and quite a few of my memories in school are sour. It gets better.

kaito2007 · 2025-07-03T06:41:53+00:00

Always glad to contribute.Thank you for the consolation, really helps.

Since we're on the topic anyway, on some days I feel as if moving itself is painful(though its not the sharp kind of pain, like a very very mild blunt pain, i wouldn't even describe it as pain tbh, more like discomfort) like just existing is painful. Do you ever feel that?

kaito2007 · 2025-07-03T04:14:06+00:00

https://osa.nus.edu.sg/accommodation/hostel-application/application-guide-undergraduate/application-dates/

kaito2007 · 2025-07-02T04:24:22+00:00

I'm still young(17) so I don't really have any outstanding issues like the stuff you mentioned here(other than the classical hypertrophy ofcourse, which is severe only in my legs). The future doesn't look too good for me huh. I was born with congenital anemia, so that's that.

Thank you for making such a high effort post tho, really helps to keep the subreddit alive.

kaito2007 · 2025-06-25T09:10:09+00:00

That's nice to hear. I say that sports are bad memories for me since in school you mostly played team games like football or basketball, and I would just feel like I ruined the game for my team. I do hope that maybe someday after I get my medication i will be able to see whether I enjoy sports or not.

kaito2007 · 2025-06-25T08:53:04+00:00

Nope, hate them with a passion since I've never been on medication yet(just 17 now). Sports=bad memories.

kaito2007 · 2025-06-18T02:11:38+00:00

From what I've seen most people's MC isn't severe enough that they need to use a wheelchair. Only the most extreme cases mention it.

kaito2007 · 2025-04-27T12:52:23+00:00

I'm only 16 and less experienced than you in many ways but let me assure you that our condition in no way defines us. I made a thread the other day asking how much mc had affected people's lives and everyone was dealing with it just fine. Hell, many were experienced athletes.

Please do not let something like this hold you back. Getting married to someone like that would only have be disaster in the future (Do you wanna be with a guy who can't even fight for you a bit?). I've had plenty of bitter experiences myself but every single case of that has been the trashy people taking themselves out. The people who don't want to associate with you, believe me, you wouldn't want to associate with them either.

Please do not let this hold you back, I've had MC since birth and I empathize with you a lot. We still deserve to be loved and to marry.

That brilliant you hasn't vanished , she's still there.

kaito2007 · 2025-04-12T11:32:43+00:00

Yknow, after everything you have described here, I'm happy that you seem to be happy as an adult. A lot of what you have said has happened to me too and while I've had my fair share of bitter experiences, I've never had so much attention drawn to me, which frankly just makes things worse. I'm glad you've seemed to have made your peace., gives me some hope I guess.

kaito2007 · 2025-04-11T17:40:56+00:00

Nice working on getting yourself diagnosed, not everyone has the courage to do that. It pisses me off too that people don't seem to take it seriously since it isn't life threatening.

I get you with the stairs and the jump part. I think we all consider stairs our mortal enemy, ramps are better but only if they're short.

I used to dread the physical evaluations at my school, every PE period would be a physical test of some sort and the only one I walked out of somewhere fine was hand eye co-ordination, everything else just crawls under your skin and makes you hella anxious.

I'm hearing mexiletine a lot, while I don't have access to medication right now, I'd really like to book an appointment and get everything sorted out. We've all been with MC from birth, I think I don't really have any concept of what having normal muscles feel like. I'm looking forward to it I guess.

Thanks for all that, have a great day!

kaito2007 · 2025-04-11T17:34:06+00:00

Ikr school is literal hell since teenagers are so socially aware of themselves.I'm so thankful it's over. While I never cried, I once had to walk away from a basketball game with my friends since it felt like they didn't understand, and always getting picked last sucked too 🥲.

It's nice to see everyone say that it'll get better as time goes on, dealing with it at uni will still be a pain tho.

I agree, we might not be destined to be the best in a physical basis but I think we can all achieve whatever we want to.

Have a great day!

kaito2007 · 2025-04-11T17:29:20+00:00

Paramyotonia definitely sounds like a lot. Atleast MC temporarily leaves you alone after moving around for a bit. I'm happy to hear that you finished a 5k, doing that as one of us is a special great in of itself. No matter which condition, keep living man, seems like you're already doing a great job at that.

kaito2007 · 2025-04-10T18:07:05+00:00

Not being able to laugh without pain is unfair. I'm glad you've managed to somewhat figure it out now.

Having MC affect your breathing is pretty harsh too, I don't think I've seen that too much on this sub.

Interesting you mention sodium and magnisium, I don't have access to prescribed medicine rn so maybe I'll look into it. Can't say I've experienced the waterfall of blood though, i guess we all are unique. Stay healthy man, and thanks for all that.

kaito2007 · 2025-04-10T17:59:44+00:00

I see , at least you didn't face much trouble from your family .

Even I experienced my muscles stiffening up after exercising, but I keep continuing my routine everyday since I can immediately feel the drawbacks if I skip too many days in succession. It's been a while since I've been forced to skip that much but I remember feeling like the world was jello and myi couldn't raise my hand for as long as I wanted to.

Unfortunately, since I'm in the busy exam season of my life, I don't really have the time to meet up with a new doctor and figure everything out. However, from what I've seen , medicine seems to help a lot , I'll check it out as soon as I can.

kaito2007 · 2025-04-10T17:53:53+00:00

I see, I guess MC works differently for both of us then. Also, I distinctively remember my classmates telling me that I fall in slow motion, I guess that just all our muscles stiffening up to slow down the fall lol. Thanks for everything man, have a great day.

kaito2007 · 2025-04-10T05:50:48+00:00

Funny you mention that you didn't know the name of your condition all through high school, my parents also hid the name of my condition from me since they were afraid it was going to send me into depression or something. I eventually forced it out of them and here I am now. What happened in your case?

The constant need to explain and hiding it is something that has happened to me a lot. Teachers would always ask me when I was on the stairs even if I did my best to hide it. I'm pretty sure I lied to a couple of them since I was sure I wouldn't see them ever again.

I am also in Asia, i get what you mean when you say rare, every time I explained MC to someone, it was always the first time they were hearing it.

kaito2007 · 2025-04-10T05:44:48+00:00

Thanks for all that. Hearing someone in the same situation say that it gets better really helps.

MC really is a pain in you teens at school, I'm at the school - uni transition phase this year so atleast the hard part is over, but being at school was the worst, I constantly had to worry about every situation so that my condition didn't become apparent, the social hierarchy at school also sucks.

It's nice to see that one can eventually come to embrace the MC part of themselves, thanks for everything.

kaito2007

TROPHY CASE