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Re: Well, now I know....

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

Re: Well, now I know....

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

Re: Well, now I know....

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