Return to Website

Myotonia Congenita Forum

 

This forum has been closed for comments.  You can still search archived messages.

 

Visit  the Non-Dystrophic Myotonias  Facebook Group

Myotonia Congenita Forum
Start a New Topic 
Author
Comment
View Entire Thread
Re: puzzled doc

I too just had a rhuematoid test done. This winter was terrible for me- I had very bad spasms and cramps, worse than usual. I started taking Supple drink and Monavie juice- I have noticed great results with both. I am also on a carb restricted diet. My doctor has me take COQ10 100 MG 3x daily. I was reading up on this and found it interesting that it is used for several nueromuscular diseases. I have a hard time staying awake (take Provigi), and the COQ10 helps with this as well.

Re: puzzled doc

CoQ10 is a great supplement (unfortunately it's very expensive!). It's especially helpful for myotonic MD...there were several studies done in Italy several years ago that seemed to indicate a correlation between CoQ10 and the severity of the disease.

The muscle damage and injury we experience with myotonia can be lessened with CoQ10 supplementation which is why it's often used in athletes who stress their muscles to the point of injury. We do that without even trying :-)

Do you have a definitive diagnosis of MC with DNA testing? Just curious because the more severe muscle pain, the excessive sleepiness, and the bladder issues are strongly associated with myotonic MD. In the earlier decades of life they can seem very similar and will look identical on an EMG. Have you had any problems with cataracts?

Jan