You can't know if your mother is a carrier of the recessive mutation without a DNA test. It would be really helpful if you could get a copy of your report. Many doctors don't know how to interpret it. If you have Thomsen's, there will just be one identified mutation. If you have Becker's there will be two: they can be two different ones or two copies of the same. The mutation code starts with a letter, then three numbers, then another letter. For instance mine is G230E. I can look the specific mutations up on a database to see if they are associated with Thomsen's or Becker's.

It is not unusual to have very hypertrophied calves and sometimes thighs, but normal upper body. It totally depends on your lifestyle, work, etc. The muscles that are pushed against more frequently are the ones that will respond by overdeveloping. (This is true in weight lifters, too.)

For instance if you live in a home with stairs or have to walk up stairs every day at work or school you're going to have larger muscles in your legs that someone who always walks on one level. If you stack boxes all day at work, you're going to have very large biceps compared to someone who seldom lifts anything but groceries. If you have a baby or toddler that you pick up all the time, that's going to cause the muscles in the arm to adapt by getting larger.

What causes the muscle to enlarge is stressing the muscle to the point that the cells are damaged and spill out their contents (which causes high cpk levels). As the muscle heals it adapts by increasing the muscle fibers that won't "tear" as easily next time. Unfortunately those types of adaptive fibers (called Type IIB) either aren't made or don't survive long in someone with MC, so we constantly are creating and destroying them.

If you learn to wait for the relaxation before you push against the stiff muscle, the hypertrophy will begin to subside over time. But most of us push against that stiffness to appear more normal after getting up out of a chair or walking up stairs, so it keeps the muscles stressed and enlarged.

As far as having children that are affected, that's where you need to get that report. If you have Thomsen's, then there's a 50% chance your children will inherit it. I have three daughters and two have MC. If you have Becker's, then there's almost no chance they will have symptoms unless their mother also happens to have a recessive mutation. This is more common in areas where there is a limited gene pool and people are likely to be distantly related.

Hormones do seem to have an impact on myotonia, and many people get worse from their teens to their 30s. As your hormone levels beging to drop, the myotonia may improve. You also can be affected by your diet, medications, chemicals like pesticides and herbicides and low thyroid. I improved dramatically when I started taking thyroid medication.

Because Prozac contains flourine that can make your myotonia worse. It's also not a good medication for younger people - it can actually cause the symptoms that it is given to relieve. I would definitely ask your doctor about trying lamotrigene since it would help with both anxiety and myotonia. You do have to get off of Prozac very slowly to avoid withdrawal symptoms. It can also cause hypothyroidism, which again, makes myotonia worse. Most doctors have no clue about this sort of thing and how it could affect MC. A safer antidepressant/anti-anxiety drug would probably be Effexor. Tell your doctor it's important that medications are not potassium-based and do not contain fluorine/fluoride. Some allergy medications can increase adrenaline output and make myotonia worse.

Hopefully you can begin to identify any triggers for the myotonia and get the stiffness to a more manageable level.

Jan

Type of Myotonia: Thomsen's

Country: USA