Hi my name is Jessica and I am 30 y/o and recently began seeking treatment for symptoms that I have had since elementary school. I have just started seeing a neurologist and he said that I have MC and I am scheduling my genetic testing to confirm the diagnosis. My question is I have sensory neuropothy and he said this wasn't "a text book symptom" for MC. He prescribed Lyrica. Does anyone have the burning hands and feet. Did Lyrica help

Jessica,

Welcome to the forum! It's true that sensory neuropathy is not usually associated with MC, but there is a condition called neuromyotonia which is a potassium channel disorder and it can present with both myotonia and the sensory neuropathy.

Dilantin and Tegretol are often used to treat neuromyotonia and are supposed to reduce the pain. They are also used for MC, but are not the first choice. It can show up at any age. It's very rare, but just a possibility to keep in mind if your DNA test comes back negative.

Herbicides (especially 2,4-D) and pesticides can cause sensory neuropathy and if you already have myotonia congenita you would be much more susceptible.

As far as Lyrica helping, hopefully someone in the group will respond.

Jan

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.