Hi Karen -
I guess the first thing I would want to have is DNA confirmation of your son's diagnosis. I find that most doctors, especially the ones who are least familiar with myotonia, or the ones who think all types are the same, just do an EMG, get the myotonic response, and label it Thomsen's and leave it at that.

If it were Thomsen's, you would most likely have relatives with it, though not absolutely. Because he is so young, I would want to know the type, and actually, want to know for sure whether it is MC, or another type of myotonia which might have a different treatment plan or manner of manifestation. It isn't really fair of a doctor to give you a matter-of-fact diagnosis if there is a possibility that it is only partially correct.

As far as the bicycle and driving thing - again, I would personally want to know conclusively, via DNA testing, what the diagnosis is. But even so, I would want to allow my son to be as normal as possible, providing that you feel his level of maturity and responsibility warrants allowing him to ride his bke to school. It is a healthy activity, and even though it was difficult for me to do, and I occasionally had some false starts and stiff moments at traffic lights and such, I rode my bicycle 6 miles to work, and 6 miles home daily for a long time. My muscles loved the workout, I know it was good for my heart and circulation, and I felt really good about myself. I think it's a good thing for a kid to do, if it is something other kids do, and if it is a safe route. He will get used to it, and learn a lot about his body and his ability to cope and adapt - these are really good tools for those of us with myotonia.

As far as driving, well, I didn't learn I had MC until I was 54 years old. I was always told it was all in my head. So even though my rational mind knew there was something not normal, my emotional self came to believe what my folks and doctors told me. I drive, I am an RN and had a very active career, as well as marriage, a son, lots of pets, a house, gardens, etc... In other words, a perfectly "normal" life, because I learned to adapt and cope with something the world did not recognize or acknowledge. Sometimes it's better to just get on with things, and not worry too much about them. Think of all the disabled people who drive with all sorts of adaptations to their cars. After a short while, the modifications become second nature.

I hope this is useful for you. Ryan will feel better, just being one of the guys. (PS - I knew a very attractive and sexy man with a tiny penis, who was very successful, very well loved and respected in his community, the father of 2 beautiful, intelligent boys, with a very smart, attractive wife. It's not the worst thing in the world!) Lois

Type of Myotonia: Myotonia Congenita, Becker's type

Country: USA

Thank you so much everyone for your replys.

I will be looking into having dna testing done, I dont understand why they have never asked for these tests to be done.
When Ryan was first diognosed when he was 3 all they told us is that he would have stiffening of the muscles and will be built like a body builder. I came away thinking there must be more to it than that and started looking into it myself.Ryan did have the EMG and they said it was MC, But not what type.He has also had ECG because he said his heart would race fast at times but that test came out ok.
Ryan has had different consultants over the years and the one he has now is called Dr Spinty and seems very good, He mainly specialises in dystrophy and neuromuscular conditions.

I do get quite worried when ryan is playing out with his friends, Lois you said about letting him be one of the guys lol, Let me tell you he is one of the guys lol which is why it is quite worrying, he loves climbing the rocks on the sea front and trees etc, but he has had a lots of bumps and stitches because he cant get his hand out quick enough to stop the fall. I do want him to be one of the boys lol but he needs to think sometimes of the dangers.
Sorry its so long, I could go on and on lol.
Thanks again , Karen

Type of Myotonia: Thomsens

Country: England