Maria,

If you have myotonia congenita, then it is probably Becker's, the recessive form, since there is no family history. Many doctors still refer to both types as Thomsen's.

With Becker's MC, there is almost no chance of any children inherting it. You could always have your husband tested by a geneticist to be sure he is not a carrier...that is the only way your baby would be affected. There are a couple of mutations that can go either way and one copy could cause symptoms. If you had a DNA test, you can send me the results and I will check the particular mutation/mutations for you.

I think what you have been reading is related to myotonic muscular dystrophy, not myotonia congenita. If a mother with MMD has a baby, it can be very affected at birth with low muscle tone, breathing problems, etc. That is not true of myotonia congenita. Also mothers with MMD often have complications in pregnancy and childbirth. With MC you may have some additional stiffness and weakness, but if you are allowed to eat to keep your strength up during labor (juices and broth) and are careful about the anesthetics used, then you should not have any more problem than a normal person. MC does not affect smooth muscles (like the uterus).

High levels of hormones like estrogen and progesterone can make myotonia worse, so you may be stiffer during pregnancy than normal. Even people in my family who had almost no symptoms otherwise had myotonia during their pregancies. But it lets up as the hormones begin to drop after the birth. So that is something to consider, but certainly not something that keeps most of us from becoming mothers. If you are on certain medications you will have to get off of them for the pregnancy and while you are nursing.

If you do a search above for pregnancy and childbirth, you will find many posts on the topic. Please feel free to ask any questions!

Jan

Type of Myotonia: Thomsen's

Country: USA

Omg! I so wish you are right, and i have mistaken myotonia congenita with muscular dystrophy! I would be very happy! Here in Latvia this disease is so rare, that all doctors are speechless. Last doctor i visited, told me that in all her practise (30 years), im second case of this disease. She also said that she was sure that only male can get this disease. :D I assume that there are more people who have myotonia, but since there are almost no information, they keep living their lifes wondering what causes charasteristic syptoms (as i did all my life till now).
You have encouraged me to take DNA test, to find out, which excately form do i have and also turn off posibility of my husband being a carrier.
I will definitely send you the results, to be sure of what to expect.
Thank you so much, Jan! :)

Type of Myotonia: not sure if i want to know

Country: Latvia

Hi. after carefully read ur message. i think you have mayotonia congentina.
because congentina is comes by birth.
as i am also the victim of this disease, i think, taking a child will be a very bad decission, i dont want to see my child also bear my disease in his all life, and after that he/she will blame me for his disease.
so we should control our self to stop this disease.

Type of Myotonia: Mayotonia Congentina

Country: Bangladesh

In many ******** there is a greater stigma attached to inherited conditions. Being "defective" embarrasses your family, hurts your chances for employment and marriage, and it causes the person affected to feel depressed and hopeless about their future (I get many emails from around the world so I'm saying this from experience). I agree that many conditions are so debilitating we should look at other options like adoption. But myotonia congenita is not one of those conditions...it is not life-threatening, it does not require hospitalizations and expensive treatment, and it does not affect our mental abilities. We can lead happy, productive lives even if we have some limitations physically.

My mom once said to me that if she'd known she had MC and would pass it on, she wouldn't have had me. It made me really sad that she felt guilty. I had a lot of struggles when I was younger, mainly because we didn't know what was wrong with me and everyone thought I was making it up. But I wouldn't choose not being born.

I asked my girls with MC if they wished they handn't been born because of it, and they looked at me like I was crazy :-)

Every person born into this world has challenges. For some it's illnesses, for others it will be their family and relationships or their financial situation. When you watch the Olympics the best stories are the ones about obstacles that had to be overcome to achieve greatness. Myotonia congenita is one of my obstacles, and it definitely makes the journey more interesting, but it is not going to keep me from enjoying my life and hopefully helping others enjoy it.

Jan

Type of Myotonia: Thomsen's

Country: USA