what is the difference between myotonic dystrophy and congenita please
I made a gene test and was classified by having myotonia conginata, however I feel I am more to myotonia dystorophy symptoms, week muscles and some curve in my lower right leg and fast heart beatings. The stiffness is more with stress and unstable sleepness.
Can you please tell me the difference between them, as I read that dystorophy is more severe and may be can not be able to walk without a help after that.
Also I am takig mexitiliine 2 200mg, right now I feel mexitiline is doing nothing, should I increase the dosage or what, please any suggestion
Re: what is the difference between myotonic dystrophy and congenita please
I made a gene test and was classified by having myotonia conginata, however I feel I am more to myotonia dystorophy symptoms, week muscles and some curve in my lower right leg and fast heart beatings. The stiffness is more with stress and unstable sleepness.
Also I am having the left side more stronger than the right side, especially my legs, so whenever i start to stand up, i always lift on my left leg, as if i made it on my right leg i will fall down.
Can you please tell me the difference between them, as I read that dystorophy is more severe and may be can not be able to walk without a help after that.
Also I am takig mexitiliine 2 200mg, right now I feel mexitiline is doing nothing, should I increase the dosage or what, please any suggestion
Re: what is the difference between myotonic dystrophy and congenita please
Peter, that's good news that you have myotonia congenita and not myotonic muscular dystropny. MMD is progressive and involves many systems and organs including the heart, liver and GI tract. The only thing we have in common with it is the stiffness of the muscles.
The usual dose for myotonia congenita seems to be 200-300 mg of mexiletine three times a day. But you do need to have your heart monitored closely. Depending on your particular mutation or mutations, you may respond better to another medication like Diamox, Dilantin or Quinine Sulfate.
If you have some symptoms of fast heart rate you might want to cut out all foods containing caffeine like coffee, tea, soft drinks with caffeine, etc. That can make a big difference. Adrenaline makes myotonia much worse which is why stress affects us.
Did you get your testing at Dr. Lehmann-Horn's lab in Ulm?
Re: what is the difference between myotonic dystrophy and congenita please
Peter, are you sure it wasn't paramyotonia congenita? That is a different ion channel disorder and can cause more weakness. It could also explain why the mexiletine isn't affecting you much.
Myotonia congenita is usually fairly symmetrical, so if you did feel some weakness, it would probably be pretty equal on both sides. Were you ever in an accident that injured your back? That would be a more likely reason for you to have the weakness in one leg. Also lesions in your brain or spine from viral infections in the past can do that. If you haven't already done so, I would ask your neurologist to do an MRI to see if there are some herniated discs that might be causing the problem.