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: New to forum

Hi Jessica, (sorry so long)

I am 54 years old and was diagnosed with Thomsen MC in 2006. I started taking Lycria 75mg twice a day in last March. Also, I started Vitamin D 3000mg and Elavil 25 mg at bedtime. This combination of medicines has stopped pain that I had in my arms, ribs, hip and leg, and more. I added Dilantin 100mg once a day to help with stiffness and also Magnesium 800mg. So far, I have been doing well except for my hands. (will see Nerve-Hand splecialist in July) Fatigue is much improved but if I over do it, I feel like all of my muscles are weak and stiff.

I was,also, told that my symptoms are not typical of MC. Seen many doctors and have tried Klonopin, Dilantin 300 mg every day, Tegretol, and muscle relaxants.

Never received any real explanation of why all this pain and what triggered MC to manifest. Never had any symptoms of MC in childhood. At 18, I experience the "not letting go of the doorknob" but that past,and then all of a sudden,(at 52 yrs old) out of the blue, boom - I hurt, I'm weak, pain, fatigue. I've had to quit my job and now on disability. (BUT, I will return to work someday!)

I am the only one in my family with symptoms and (DNA) diagnosed with MC.

This website is a great place to talk and listen to others. Keep listening and trying different medicines and therapies.