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: Medications

Blessed for having Mexilatine available or four leaf Luckey!

Type of Myotonia: Beckers

Country: USA

Re: Medications

I would say blessed. We have restricted functionality with our bodies. Many people out there have NO functionality with their bodies, or even ailments that cause death! I thank God daily for only having MC. When I was first diagnosed, it was myotonic dystrophy, which would have been a lot worse. I, for one, feel pretty blessed! Stay strong, and keep faith!

Country: US

Re: Medications

I definitely agree with you both. It could be much worse.

Type of Myotonia: Thomsen

Country: Canada

Re: Medications

Hi Paige

I have been on Mex for about ten years now and I too am completely reliant on it. I am 25 now and have been on the same dose since I was 15. However, my brothers both have Beckers too and there doses have increased over the years. If I go a day without it I am completely stiff the next day but while on it I would say I am 95% 'normal' functioning. I notice too if I am active the day I miss a dose ( I do a lot of warming up first) that the next day my muscles are very sore.

I too have been worried over the years that this drug is too strong to be taking daily. I've read negative comments about heart damage from various places, however you cannot believe everything you read on the Internet. My brothers and I go once a year to see our specialist and get our prescription renewed and I asked a few years ago to have our hearts checked out because I was worried. We had heart monitors on for 24hours and the results came back completely normal. I check my blood pressure often and it too is normal.

Hope this helps!

Type of Myotonia: Beckers

Country: Canada