Myotonia Congenita - Its Not Just About Fainting Goats

[TheSeekerOTruth]

LOL apparently, the muscle stiffness of myotonia applies to your videotaped erection too??? Did anybody else catch that? But that shit away man... There are children on this site...

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[SepherStar]

@BenMed978 That's right! It can cause a life threatening masseter spasm, among other things.

[inuyasha44566]

i have myotonia congenita i mean lol

[inuyasha44566]

i myotonia congenita and i am a girl...i have it bad i fall because of my muscles constricting and slowly letting go...i am ripped with muscles because of it and i finally found out what it was and the doctor prescribed vimpact to me and now i am normal like a regular person,i can get up and run and anything^^

[impalax92]

@inuyasha44566 the only meds they ever gave me other than physical therapy -_-, gave me an allergic reaction. can you elaborate on your condition these days? i'd freakin love to be regular.. aha

[thefool2007]

Thanks for putting this video together.  My wife, son and youngest daughter have Myotonia Congenita (sodium channel). In addition to falling, I have seen my wife sneeze and her face gets stuck. My son's eyes get stuck shut too. His muscles are highly developed due to this condition.

[SepherStar]

@thefool2007 Your wife and daughter would actually have paramyotonia congenita, or potassium aggravated myotonia.

[mememallmalll]

Thanks

[XtrOrdinaryFilms]

@mememallmalll You are welcome. Thanks for watching. 

[meg5730]

I am sure I have this (it's genetic and my dad has it so I know that my symptoms match up) but I've never been officially diagnosed. Is it worth it? Because it requires a muscle biopsy and I'm still pretty young....

[XtrOrdinaryFilms]

@meg5730 For me it was worth finding out that I had it. You can get a DNA test instead of the biopsy. 

[soccer9870]

@meg5730 I have this and i didn't have a muscle biopsy or DNA test. The way they diagnosed me was a EMG which is when the doctor takes a thin needle and sticks it in to different muscles on your body for me it was my shin, hip and shoulder and they measure the electrical activity given off by your muscles. As for your question yes it is worth it some people like me can keep it under control with medication and others it's more severe but its always worth knowing.

[SepherStar]

@meg5730 They usually don't do the biopsies anymore if they suspect myotonia congenita. They diagnose it using an EMG and genetic testing which is done through a blood test.

[meg5730]

I have this, except I don't fall much. Mostly my legs and arms just completely freeze and I have to "penguin walk" until it goes away. It also lasts longer when it's cold or I'm nervous.

[soccer9870]

@meg5730 You just explained how it affects me to the t, But i have had about 5 concussions from falling down through the years.

[UndNowVeDanse]

My very capable colleague at the vet school in London where I work is analysing the "famous" goat kittens to find the specific mutation in the muscle protein that caused their condition. Hopefully she might have something in the future that can help brave people like you or at the very least, help future generations.

[bmxjoe100]

hey Jim I suffer from paramyatonia exercise makes mine worse I'm sorry you suffer from this because it sounds like we have the same pain

[Denmark4200]

Hallo, i am from Denmark, i also have this disease called myotonia congenita (type) becker. I have never talked to any one about it only the doctor. the disease i very difficult to explane. Anyone who have this disease write to me !!!!!

Sincerly Pia

[XtrOrdinaryFilms]

@Denmark4200 Yes the disease is very difficult to explain. It is inconsistent and has several different stages that the muscles go through from first contraction forward. I tend to just tell people that my muscles contract, but then they don't relax right away, they stick. After I move around for a while the muscles start to relax quicker after contractions. No matter what I say humor tends to make speaking about it easiest.

[mogodbeer]

Two of my sons have this condition. None of the medications worked for my older son who was diagnosed with a DNA test. The younger one actually has it worse but hasn' beeen officially diagnosed as there seems little point really. We can see he has it and he knows he has to warm up. The elder one suffered many broken bones before he was diagnosed from not warming up before exercise. And you defianately dont want to walk upstairs behind either of them as they take so long to get up there.

[skyewells]

I'm an anesthesiologist and was just reading about this condition - thanks for being willing to give the demonstration. Have you had any trouble with anesthetics?

[XtrOrdinaryFilms]

@skyewells - Yes, people who have this condition cannot be given anesthetics. The last time I had surgery, they gave me morphine.

[psisky]

Great video. I've always found it difficult demonstrating MC symptoms and never actually thought of just throwing myself into a run for the inevitable crash, bam, moment. Docs used to say "well you walked in here no problem."

[XtrOrdinaryFilms]

@psisky Thanks.I just posted another video that shows me walking up a flight of steps. You can really see the muscle stiffness.

[snaffalano23]

Nicely done sir. Respect for your explanation.

Since studying from a book is sometimes hard to imagine, this visualization plus explanation will stay in my head forever!!!!

Have a great day and enjoy life to the fullest, we all only live once and life is short, all we got to do is make the best out of every challenge life has us to offer.

A med student from germany

[XtrOrdinaryFilms]

@snaffalano23 Thank you. I'm glad I was able to show you a visual of what goes on. I try to find the positive results of having this disease, such as high endurance, large leg muscles, and the empathy I have for what other people go through.

[randymbender]

I would just be afraid for you if you had to runaway from a sudden threat, as it appears you'd cover a short distance and then drop!

[XtrOrdinaryFilms]

@randymbender Pretty much. It can be scary at times, especially when it has happened on cement. ouch!!

[aca532]

I suffer also from Para-Myotonia Congenita, have done since I was 12, diagnosed at 19 by EMG (I was 4th in UK to have it, apparently not so sure now!) and fully by DNA test at 21. I am now 34 and the effects can be upsetting, and painful, can be dangerous, especially when trying to run to a bus, cross the road etc. There is no cure, there are only treatments that can help with the effects. I currently take Diazepam and Mexiletine, which somewhat help.

Does anyone get Muscle Ticks too??

[psisky]

@aca532 I've always had a blinking problem with my eyes. Nowadays it feels worse. I'm told I twitch my nose too, and tongue feels like it's very slow writhing deep back in my throat. Am I the only one?

[inagod]

well done,i have the disease,Becker's type.With our high center of balance we as humans have a long way down,compared to our four legged friends.

[XtrOrdinaryFilms]

@inagod Yes we do

[Newbpwng]

damn bro nice calves 

[XtrOrdinaryFilms]

@Newbpwng Thank you. Part genetics, but mostly the disease does this.

[THEPECKONATOR]

I suffer from this. I had a pretty bad attack last night and today. Couldn't move an inch of my body, the muscle power just isn't there. I find that there's two types of symptoms. The stiffness or contraction which is a short term attack, and theres a long term weakness which makes you like a slinky.

[croees]

Thank you!

[chrissambol]

I also have this condition. I am a baseball player and I am 19 years old. I take a pill 3 times a day that is supposed to be used for treatment of malaria but it works great for me. if I dont take it tho it is pretty brutal

[petrusz82]

myotonia.hu

[petrusz82]

myotonia.hu

[robiiiiee]

massive calf muscles

[CamKJS]

Thanks for the video - I just saw the feinting cats and wanted to know more about what caused it, very informative and insightful.

[tpmedley]

Thanks for sharing this, James... I have this too, and I have broken my fingers and toes several times from falling so stiffly. I learned all sorts of "tricks" to hide this when I was a kid... I didn't get a name for it until I was in the 8thgrade. I was diagnosed by a doctor that trained in the navy, and had seen it in a sailor.

[cpoppel]

Hey Jim - Thanks for making this video. Really great - you fall down so I don't have to! I take Mexiletene every day for my myotonia and it helps. Only lasts for about 6-8 hours though and takes a while to kick in. I am actually a pretty good athlete when I don't have to move too quickly. I play golf, and things work out. It's really cool to see someone else with the disorder - I've actually never met anyone else in real life that had it. For me "warming up" takes about 30 seconds - for you?

[kimberlyreneelove]

I actually feel bad at laughing at the goats. Its not remotely funny when its a human. Do you think the goats would feel pain?

[XtrOrdinaryFilms]

@kimberlyreneelove I think the goats probably don't feel that much pain, just because they have a short distance to fall. What is probably worse for them is people scaring the crap out of them all the time just so they will fall over.

[aanglin72]

James, just read about this in Quest. I too have a very severe form of MC and know all to well the struggles associated with it. Good luck to you and yours, thanks for sharing.

[elkriversoul]

6 members of my family have the Thomsen's form of Myotonia Congenita. It was passed through my grandad who passed away wondering why he had the problems he did. Our family also has Cramp Syndrome with this, as well as heavy fatigue and muscle pain due to the constant interaction between the muscles. It has been a constant struggle for me through the Military, Corrections, and every day life. Thank you for posting this......

[moonlightsea8]

I also suffer from Para-Myotonia Congenita with the added bonus of Hyperkalemic Periodic Paralysis. My lower leg "calve" muscles have given me problems since I can remember. Finally a few years ago they "blew out" and have refused to function properly at all. They have been atrophying ever since. My lower legs have lost their athletic, built-up look and are getting thinner and thinner. For me, the humor in this is long gone. Thanks for the great vid!

[sctmtemp]

interesting video man, thanks :D

[billedstormer]

the cats in the video with the lasers have myotonia congenita as well. i didn't know that myotonia congenita could be in anything but goats. it sucks.

is there a cure?

what other animals have there been document cases of myotonia congenita?

[SepherStar]

@billedstormer There isn't a cure as it is genetic, but it can be treated with medications such as Mexiletine, which is becoming increasingly more difficult for people to get, and some people find they can control it to a degree through life style. It has also been observed in dogs, primarily Schnauzers I think, and mice or rats have been engineered to have it. Theoretically, it can affect any mammal but examples of it in the wild would be rare for obvious reasons.

[Merrick2302]

@billedstormer there isn't a cure, there are pills that do help with it a lot though, mine i have to take twice a day but it still doesn't "solve" it all the time

[PokemonGlitches123]

arnt there drugs u can take 4 this? and anyway i thought it was a nervous system condition where the nrves keep making the muscles contrct, rather than the muscles contracting 2 there own accord.

[inagod]

@PokemonGlitches123 there is no cure,drugs might dampen it a little,but the side effects are worse.In the future,gene therapy will put a end to this and some of the killer muscle diseases for good.I'm the only one in my family that has it,my 3 girls are normal,my mother and father passed it to me,but they did not have the disease.My sister does not have it.I have the Becker's Myotonia Congenita.

[MultiMonitor]

Thank you for making a good, clear, educational video.

[wenarttube]

I see . . . . I didnt know if myotonia congenita can happend in human too, all I know is a goat and a cat . . . thanks you for your education sir Jim :)

[Kirbz777]

I thought I was alone suffering from this disease . ..

thanks for sharing sir . ..

To tell you frankly I am relieved to see this video . . .

more power to you sir.

[Justaduk05]

Very good video. I too suffer from this disorder, and you hit the nail on the head. Anyone who suffers from this learns to hide the disorder by avoiding sudden movements whenever possible. Although not directly a dangerous disorder the effects can be. Imagine crossing a street and a car blows a red light, with this disorder diving out of the way is near impossible. The ignorance of a lot of the posters in the fainting goat videos is quite disheartening. Great video, I hope it teaches some people

[bmx3r43va]

@Justaduk05

hey man i so agree with you. I have myotonia congenita too. I am 16 and have tried to hide it ever since i noticed that i was not normal (around 1st grade is when i cared about it)... i wanted to ask you a few questions about personal experiences with it. I know it may sound wierd and you do not have to. But i would really like you to email me.

matthewbrenner1@hotmail.com

[chrissambol]

@Justaduk05 I have this condition too and I play baseball. I am taking a pill that is supposed to treat malaria but it works for the condition oddly enough. It is really a weird feeling huh?

[Avarant]

Wow, you learn something new every day. I didn't realize this affected more than goats until today. If your goal is spreading awareness, it's working.

[jallison71]

Very interesting! Glad you're not over-sensitive about the subject because your demo is a lot more informative than reading about it. Thanks for the demo.

[jetcat4445t]

i suffer from this and jim is hitting it right on the head though no mention of severe pain issues like i deal with . i just recently had a DNA teats done and found out i have Becker Myotonia Congenita . i found out in '86 and never thought i would have to deal with this much pain . ron

[Magpie6410]

This was an extremely educational video. I found your explanations of your personal experience very compelling. Thanks for taking the time and effort to teach me something new.

[heavenleigh86]

I want to say thank you! I have a severe form on Thomsen's Disease and you are the first person who I have actually "seen" with the same condition, it made me tear up. It's nice to see that i'm not the only one. Also you are very brave to actually show people how we fall...i know that i have had A LOT of falls and when you can't catch yourself its very dangerous. Again...THANK YOU

Heather in Indy

[Gyaro]

Watching the goats affected was interesting, watching the kittens was hilarious. But seeing how it affects people kind of takes the humor out of it. Thanks for this educational video. As an Army health care specialist, I have to be ready to recognize any kind of affliction. Now I have kind of an idea what to do if I see this in a person. Thanks again.

[XtrOrdinaryFilms]

@Gyaro I imagine that is a very interesting job to have. I hear what you mean about seeing how it affects people takes the humor out of it, but I try to see the humor in it every day. It is funny, and those who are close to me tease me about it--there's just a difference between teasing and ridicule or mocking that some people haven't been educated about.

[thelippy]

@XtrOrdinaryFilms Pretty awesome that you find the humor in it. Life is pretty hilarious as a whole, and much more enjoyable when we can chuckle at it.

Thanks for posting this.

[Mesterse]

@Gyaro The kittens died. I thought it was heartbreaking.

[jessicaann2584]

@Gyaro How can you say "watching the kittens was hilarious". Those kittens have a serious disorder that lead to their early death. How can you say it is hilarious to watch those helpless animals suffer?? What is wrong with you???

[raintree93]

@Gyaro I don't think its funny, ever.

[puntz182]

Nice work on the video. I have the same condition, to a lesser degree. Only the people who know me are aware of the condition, and will notice when I am struggling. I'm a boxing instructor, hockey coach and personal trainer and don't let this condition get in the way. on the lighter side of things, I find it funny when I release the handbrake of my car, but am unable to release my hand from the brake itself!

[MorgandBritt]

Interesting, never heard of this before.

Sorry you have to feel that pain.

Is it as if you have a charley horse in your whole body?

[XtrOrdinaryFilms]

@MorgandBritt No, I wouldn't call it pain. It's more like when you lift weights. My muscles just contract and stay cotracted and then eventually that goes away. In the video you see me do six or seven pushups in a row with little problem. At point the stiffness had pretty much gone away.

[Myrddin51]

@XtrOrdinaryFilms

helloe

I have this disease too, but I think I have the less serious one. There are too? no?

Thomsens Disease and another one : - o

[inagod]

@MorgandBritt in a normal person,the chemical electrical firing of the muscles is very precise,with Myotonia Congenita its unregulated at times,causing multiple firings of the muscle at the wrong time,making you stiff,it affects all the musles except the heart.There is a version that does affect the heart,that is fatal.We just have to be careful of falls,hitting our heads,breaking limbs as we have no control,unlike you,we cant stop the fall or protect ourselfs.

[DeathJunkE]

Thank you very much for such a informative video. 

[manylulus]

Thanks for the video. I have the same condition. I can show your video to explain what I have. : )

[supercooled]

Thanks for the video.

I think during my child hood in school I knew a girl who had the condition. It's so sad how we made fun of her because of her differences.

Hope this video brings more tolerance to people.

[XtrOrdinaryFilms]

@supercooled I wouldn't feel too bad about it--I made fun of people in school too for their differences--I was just glad it wasn't me. I appreciate your comment that you hope this video brings more tolerance to people. It's human nature to reject things that are different than what we're accustomed to, so we just have to work hard at trying to see things from other's perspectives.

[abdulkadirturhan]

@XtrOrdinaryFilms

hi i have myotonia congenita to!

i am soo happy i find a person that have myotonia congenita too!

[RedneckwithGuns]

Very interesting and informative video, thanks for the contribution. I have a question though: do you do any other sort of exercises to help with the condition other than the stretching you demonstrated in the video? I'm particularly interested in if your condition makes it impossible to exercise with weights like a non-affected individual, or if that would be painful due to the lengthened muscle contractions. Either way thanks for intriguing this medically-minded youtuber :)

[XtrOrdinaryFilms]

@RedneckwithGuns Lifting weights is not a problem, its just because of the intense contractions, the lactic acid builds up much quicker in the muscles. Most people tend to do exercises that are not as strenuous to avoid this.

[KillerFridge]

Fantastic informative video, about a disorder that I didn't even know existed! Good work :)

[XtrOrdinaryFilms]

@KillerFridge Thank you very much. I'm glad you liked it!

[daftdude05]

@XtrOrdinaryFilms

So is there any pain besides the fall? I have bad leg cramps from playing soccer where my muscles contract, stiffen, and dont relax for periods of time and it is very painful. Do you experience this or is it too fast?

[XtrOrdinaryFilms]

@daftdude05 The pain isn't any worse than what you experience if you make a fist and squeeze as hard as you can. It does go away fairly quickly (maybe after 15 to 30 seconds at most, until the next contraction happens). It sounds like you might have an ion channel disorder, which is what Myotonia Congenita is, but your's sounds like a different type than mine. You might want to check out Periodic Paralysis Association.

[WorldScott]

Thanks for making this excellent and informative video. I always had the impression that when stiffness set in it partially stemmed from a loss of consciousness. Now I no longer have that impression.

Thanks!

-Scott

[XtrOrdinaryFilms]

@WorldScott Thanks for your comment. Its actually a completely chemical issue. When human muscles contract there are potassium ion channels that open and allow potassium ions to flow into the muscle cell. When the brain tells the muscle to stop contracting chloride ion channels open up and chloride ions flow into the muscle causing the muscle to relax. In Myotonia the chloride ion channel does not respond immediately and the muscles stay contracted.

[WorldScott]

@XtrOrdinaryFilms Actually I didn't express myself correctly relative to what I wanted to say. I meant to say that I originally thought loss of consciousness was a component of the condition. Thanks for your elucidating response. ;-)

-Scott

[nchumley]

He's a pretty muscular guy too, probably from the fact that his muscles naturally work a little more than a normal person's due to the prolonged contracted state.

Do you have restrictions on driving? What do you do for a living?

[XtrOrdinaryFilms]

@nchumley No restrictions on driving. I've had some moments where my leg muscles have locked up on me and I've had a hard time getting my foot up to the brake. I've never had a wreck because of it, but it's definitely lead to some interesting situations.

I work in compliance and licensing--so pretty much a desk job, although I did deliver pizzas for about 7 years.

[BraveRobot]

Thanks for the video! I'd never heard of this before in goats or people. Are you able to exercise regularly, or does the MC make it too hard? Thanks again for putting this out there.

[XtrOrdinaryFilms]

@BraveRobot . Thanks for the comment. I can exercise regularly--pretty much every day, but my muscles get sore quicker than most people and the pain that everyone experiences after they work out lasts longer for me.

[IdioticGeek]

What kind of pain do you experience when this happens? Is it like when you get a knot in your back, but all over?

[XtrOrdinaryFilms]

@IdioticGeek The pain is the same kind of pain you feel when you lift weights. Usually it is not too intense, but a good way to see what it feels like is to make a fist and squeeze as hard as you can. That's about as painful as it gets.

[gnarr]

great video! I didn't even know this disease existed in humans until I saw that cats also can have this ( watch?v=9CC_9aFuEkA ) and googled it.

Thanks for sharing this with us :)

[XtrOrdinaryFilms]

@gnarr Thanks --that's awesome. Those kittens are a little more graceful when they fall than the goats are.

[dietpepsi01]

damn, that's gotta suck

good video

[XtrOrdinaryFilms]

@dietpepsi01 No its not too bad. Its made me a strong, ambitious person. The hardest thing about having the disease is when you are a kid. Most people who have it are misdiagnosed when they are younger, so they don't know what's going on.

[fuel357]

Thanks for the video. I was indeed looking for the goats videos. I never thought it could also happen to people as well.

[XtrOrdinaryFilms]

@fuel357 Yeah, me and a bunch of people who have it have been trying to get funding for a longer documentary piece, but haven't had luck so far. It's a very interesting disease that I think gives a completely different perspective than what is out there right now. For instance, watch a video that shows the Fainting Goats. What you'll notice is that much of the time they move around with no difficulty. It's only when people scare them and they move really quickly do they fall over.

[alcapwned86]

You're pretty muscular. I wonder if the fact that your muscles are constantly fighting each other has anything to do with that. It's like being forced to lift dumbells every time you warm up.

[XtrOrdinaryFilms]

@alcapwned86 Yeah that is one of the positive aspects of the condition. Well positive for men--most women who have it don't like it. What happens is the muscles contract and then they don't relax right away, so it's almost like you are constantly doing isometric exercises. Besides my stomach, I'm pretty muscular.

[bmx3r43va]

@alcapwned86 hey i have the same disease and i am SUPER BUFF and it is because of the disease

[spoonburger1986]

I think many more people need to see this video. I hope it gets more hits.

[XtrOrdinaryFilms]

@spoonburger1986 Thank you--so do I. Spread the word, because we are trying to get the word out.

[JeefCakes]

Only video I've seen on this on YouTube. You seem like a tough bloke

[XtrOrdinaryFilms]

@JeefCakes Thanks. I try to be. I knew the falls in the video were coming, so I was able to prepare myself, but I've had many moments where I've locked up like a board and fallen flat on my face. All you can do is cuss a bit and then laugh about it though.

[holocaustrecess]

Very informative. Thank you for sharing!

[PeterCWhitaker]

Very brave of you Jim. It's a pity tha the goats get all the attention when it's people like us who suffer from this condition.

[XtrOrdinaryFilms]

@PeterCWhitaker - Thanks Peter. I hear what you mean about the goats. I have different feelings about this, and most of them come from my fear of what will happen the day that the media catches onto this story--that people have the same condition as the goats. Realistically, I think there will be many varied reactions to this--some people will pity people with MC, some people will laugh and mock people with MC--like they do the goats--and some people will be educated and accept what they see.