Less than 24 hours after my diagnosis.... I have been living with this since my early childhood (I am 46), coping with the physical limitations and embarassement. I tried several times before to obtain a diagnosis, but with no success. Therefore, I invented a "bad knee" to explain my conditions to family, friends and co-workers. Turns out I am not alone. I almost cried last night after googling MC and finding my exact story told by other people. I am relieved, I now know what it is and I know I can cope. I will probably participate actively in this forum as I may have several questions for you guys. Thanks in advance for your future answers.....

Type of Myotonia: Probably Beckers

Country: Canada

Welcome to the forum! Isn't it great to finally have a name for all the weirdness we experienced for years?

Is your doctor ordering DNA testing? That will tell you for sure if you have the recessive or dominant form or if you have a "sister" condition like paramyotonia congenita.

Jan

Type of Myotonia: Thomsen's

Country: US

Hi Jan

Yes, I will be going for genetic testing....which will likely take about 6 months as this is not an urgent matter.... In the meantime, I have been given a prescription of Mexiletine, which after reading side effects, I am not too thrilled about..

Pierre

Type of Myotonia: Probably Beckers

Country: Canada

Hi Pete:

It's really uncanny how similar some our stories are isn't it?

I wish I had thought to say something like "I have a bad knee" growing up. I would tell people "I have a problem with my muscles" but it was never really effective at communicating to them that I REALLY had a problem with my muscles.

There are two primary categories of non-dystrophic myotonias. Chloride channel myotonia, which includes Thomsen and Becker MC, and sodium channel myotonia, which includes paramyotonia, potassium aggravated myotonia/acetazolamide responsive myotonia, and some forms of periodic paralysis.

The disorder can sometimes be controlled to some extent without medication. If you have a chloride channel myotonia, you might find that regular moderate exercise helps minimize the myotonia in the long run (it might temporarily worsen it though). If you have a sodium channel myotonia, you might find that potassium intake has a noticeable effect on your symptoms.

Type of Myotonia: Becker

Country: USA

Hi Jenna

Really uncanny, you are right. I can't believe that others share my fear of these three little steps to board a bus. I can still feel the anxiety seeing the bus slow down at my stop... "Will I be able to board it normally?"...

Yes, the "bad knee" excuse really helped as it explains what they were seeing, made sense and closed the discussion.

As for medication, I am not too keen to take any at this point (unless someone convinces me that this is life changing). I managed for 35-40 years to function relatively normally, there is no suffering per say. I am tempted to manage the disorder without medication. Now at least I can say that I have a very rare and diagnosed disorder which explains why I cannot do everyhting that other people do easily...

Type of Myotonia: Probably Beckers

Country: Canada