Dear Moderator, Thank you SO MUCH for all the information you give and the wonderful help you provide. I'm sure I join many others in thanking you for taking the time to do what you do on the forum. It is wonderful to have someone so knowledgable. Are there any statistics on how many people are out there with Thomsen's and Becker's? When I went to Mayo Clinic in Rochester, MN to be diagnosed, they told me they see only tens of cases of MC. I had about every neurologist in that building poke a needle in me and chatter wildly about the electrical storm on the monitor. They passed me from one to the next like a pin cushion and I politely obliged because they were sincerely interested to see the phenomenon. There can't be lot out there or are there? How many of us are there anyway? At times in the past, I felt like an albino 3 hump camel but the forum helps you feel not so alone with it. Best Regards, Stuart

Type of Myotonia: Thomsens

Country: USA

I've never seen any definite population statitstics in relation to people with MC; the best is an estimate of occurrence within the general pulbic.

For instance, I live in a city with a population of 262000 (approx) and I am the only patient with MC that my neurologist knows of, which is lower than the generally quoted statistic of 1 : 100,000.

Type of Myotonia: Becker's

Country: England

Stuart:

I've heard of a prevalence as high as 1 in 25,000 in some regions of Scandinavia, to a world wide prevalence as low as 1 in 50,000 to 1 in 100,000.

Becker MC is more common than the dominant Thomsen MC.

MC (chloride channel myotonia) seems to be the second most common myotonic disorder. I think Myotonic Muscular Dystrophy is more common. Less common are the sodium channel myotonias. I've only seen one prevalence statistic and that estimated a prevalence of 1 in 400,000.

But I've come across an incident of a family where some members had both chloride channel myotonia and sodium channel myotonia. The odds of that happening by pure chance alone would be 1 in 40,000,000,000 so it's probably the case that things are more prevalent than thought.

A lot of people never figure out what's wrong with them. Perhaps their symptoms resolved later in life or they got so tired of being brushed off or not getting any answers they stopped bringing it up. A few people have been diagnosed after having an EMG for an unrelated injury or condition. Some individuals were diagnosed after having a life threatening masseter spasm during a surgical procedure. I came very closed to never being diagnosed.

It seems to me that people in the UK are far more likely to get a diagnosis than those in the US because there aren't as many barriers.

Type of Myotonia: Becker

Country: USA

My daughter has Becker's MC and she sees Peter Karachunski, M.D. at Gillette in St. Paul. He has other patients with this disease, although I believe she is his youngest patient.

Type of Myotonia: Beckers

Country: USA