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Re: Medications

By dependent I mean that if I go off of it for even a day I start getting stiffer(as expected) but after two or three days I literally cannot get out of bed without fighting every muscle in my body. It feels like I am even stiffer than what is was before I went on the medication, but that might must be because I haven't felt that way for long periods for 11 years. I cannot live without this drug unless I were to spend a lot of time off of it trying to get used to how my body reacts and how sevre those reactions are.

I do understand you wanting to try it cause your mc is too strong. Talk to your parents about it and let them know you want to try this.
One other thing I have noticed is that, when I started I took 1 dose(1 pill) each day. Now I take up to 8 doses because my body is getting used to the medication and I still have stiffness lingering all the time.

I hope I could help.

Type of Myotonia: Thomsen

Country: Canada

Re: Medications

You younger people with beckers are truly blessed at haveing Mexilatine as an option,I'm shure there will be better meds soon so why suffer for no reason as long as Mexilatine is available, and safely works for you! If I only had the option when I was young I maybe could have finished college...I started Mexilatine at age forty and stopped by my neurologist because of my kidney stones,my other option was predisone at 5 mg per day it worked great and then came all the side effects, now I'm hooked on sleeping pills and happy to be back on Mexilatine,the only side effect I have is blurred vison...

Type of Myotonia: Beckers

Country: USA

Re: Medications

That made me laugh a little bit. Not your story, but that we are blessed.

Type of Myotonia: Thomsen

Country: Canada

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