Hi Amber - What makes you feel you have the Becker's type, if others in your family have it? That would seem to indicate the Thomsen's type.

Depending on your age, and family considerations, among other things, the DNA testing is useful to identify the correct diagnosis.

I just turned 60, and didn't learn about my diagnosis until I was 54, and it was totally accidental. Before that, I was always told I was making it up, etc...

I never took any medications for it, and once I knew what it was, I felt there was no point in taking medications, since I basically know how to cope.

I have always done stretching and dance, some yoga and 'easy' tai chi. I am almost always moving - my body taught itself this defense mechanism when I was young and wanted to be active - and it just became second nature. It may have gone overboard, as I am completely unable to truly relax, even in sleep... but I'm SURE there is a happy medium! - lois

Type of Myotonia: MC- Becker's type

Country: USA

Hello Amber!

I think most MC sufferers feel like they are alone in the world with this condition.

This forum is something of a haven!

Type of Myotonia: Becker's

Country: England

Hello!
I would like to tell my own story of my life with MC. First I hafty say that my english skills are not so good as I hope, but hopefully everyone get a point.
I´m 21 years old woman from Finland (a country where the Santa is coming from) My first memories of MC is suprise suprise not nice. I was a 4 years old girl and I falled to ground every time, when I had sit on a chair a littlepit longer. I was very affraid when I saw stairs. Then my mom started to be anxious and we went to a doctor. The docktor and mom toud to me that I had some growningpains that I hafty just stretch ( I can still remember that pain, I cryed and mom forsed to continue) and have some exercise. In a age of 7, I started a school and then the real MC Hell ( as I call this) started. I was totally horrified! I was afraid every day, expecially when teacher returned our exams, beacose it meaned that I hafted to stand up quikly and pick up my paper from front of the class. I never wanted to sit next to a door,beacose if someone would come late,it was I who`s hafted to opened it. And our gym teacher was therrible woman! She forsed me forexample to run, to swim even though a get gramps and I was afraid that I`m going to drown. I started to hate spring, beacose it meaned that athletics started. I started to lay to the doctors,parents and friends that I`m allergenic to chlorine water etc.. No one didn`t know what was wrong with me, and I get depression. I remember one day very clearly. I cant remember what had happened earlier in that day, but I remember that I was very sad,ashamed and I cryed hole day. In the evening I went to the Sauna ( a hot room in a badroom where finnish peoples are washing)and I was so angry to my self and to my legs beacose those hadn`t worked, so I started to hit my feets with a metallic bail. After that day, my mom take me to the doctor again and forsed them to check my legs better. It took 10 years, but in a age of 14 I get my diagnos. I was relieved but in the sametime chocked. I had allways thought that an surgery can fix my legs. After that, I joined in a finland`s muscle disease federation ( www.lihastautiliitto.fi) and started to create connections to other peaoples some had a some kind of muscle disease. I had get my life`s greatest friends and soulmates from there. We have a every summer a rehabilitation and it`s always a highlight of a year. And I hafty clarify that my friends doesnt have got MC, they have dyschenne etc..
The present day. I dont know if I can say that this all is OK to me, I still hate this, but somehow I can say that this diase have gaved to me so much. A great friends and a larger worldview. I have tested mexitil medicine many years ago, but I didn`t wanted to continiue that and today I dont use medicines at all. I use (one) crutches to help me not to fall and sometimes a wheelchair. If I hafty walk long distances my legs get very aching that only sleeping helps. It`s hard to tell peoples of MC beacose those cannot often understand why I can sometimes do many things and sometimes I sit on a wheelchair.
Injurys. Those I have had a many!! meaby the creepyest thing has been a shopping journey with my mom. I had weared a shoes where were a VERY LITTLE heel ( 2cm meaby)and we went in to shop were was a mat. My heel stucked a littlepit on it and you know the rest. There was I lieing on a floor BUT the floor was a made from stone and I hit my head on it. I was stunned a few minutes and when I "woke up" I started to cry like a little child beacose I was so ashamed and I was also drag down one of shops shelfs.
That was my little story
Creetings from Finland! Here is a very cold autumn now, oh my muscles love this coming half year

Janica

Type of Myotonia: Becker

Country: finland

Janica, Thank you for sharing your story. You've gone through so much with this disease (or do we refer to as a condition?), and it sounds like you have achieved great confidence and sense of community, which help us survive hardship.
I wish you the best of luck!
Take care,
Amber

Type of Myotonia: Becker's

Country: USA