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Myotonia Congenita Forum
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Newbee to site

Hello everyone
I am 40 years old and have dealt with myotonia most of my life.I just started to research myotonia and was amazed to find a forum on it.I was told it is very rare so I just went by what the doctor told me and didn't think there were this many people out there with it.I was wondering how many of you have kids and do they have the myotonia as well and if so what age did it start to show.I have a 10 year old daughter who does not show any signs and I am praying that she never does.I can remember being able to run in school and have no issues and then one day it was like someone flipped a switch and then I couldn't move anymore.I think it was 6 or 7th grade when this happened to me.I've read a lot of stories on this site and can relate to a lot of them.I have so many things i could say and I'm sorry I am all over the place when I say this.I am also from a family of 5 kids and four of us have it all to a different degree.I've been taking dilantin for so many years and I did try mexatil but I had bad side affects and had to go back to dilantin. Any comments would be great and thank you for having a great site.

Type of Myotonia: myotonia congenita thompsons

Country: US

Re: Newbee to site

Hi Shawn:

Theoretically there are between 70,000 and 140,000 people in the world with MC. We have 300 and something of them on the Facebook group, though a good number have a sodium channel myotonia like paramyotonia.

I was a late walker and had a lot of weakness, soreness and muscle stamina issues when I was younger. I remember a period when I was 6 where my mother dragged me to a number of doctors because I kept complaining that my legs felt "weird" and like they were going to buckle. I think I had some isolated incidents of myotonia in my hands around that time but didn't think much of it.

When I was about 9 or 10 though, I developed severe myotonia in my legs over the course of a week or so. I remember waking up one morning, and when I stood up to get out of bed, my legs muscles took a few seconds to relax. The next day, they took longer, and so on. By the time I was 17 I had severe, full body myotonia, and sometime around then, developed painful muscle cramping in my back, which seemed to be a stamina issue. When I was around 20, it started to drop off after losing a lot of weight. The myotonia itself held steady until I was about 27, but the stamina and weakness problems worsened in my upper body. And then when I was 27, over the course of a few weeks, the myotonia dropped off substantially, but shortly thereafter, I developed a lot more stamina issues with my hands.

I don't have any kids but the odds they would have it are low, and if they did have it, it would probably be mild.



Type of Myotonia: Becker

Country: USA

Re: Newbee to site

There's a possibility that she has the gene but is asymptomatic, but it could still mean risks with general anesthesia, so you should both get DNA tested.

If you have Thomsen's and she has no symptoms at 10, it's really unlike that she'll get any. Neither of my kids appear to have any type of symptoms, either.

Type of Myotonia: Thomsen's

Country: USA

Re: Newbee to site

Thank You for responding! I hope your right.

Type of Myotonia: myotonia congenita thomsons

Country: US