hi ive had mc since i can remember my mum noticed i walked on my tiptoes n really struggled to move about when i first started walking. i have never met anyone with mc but my hospital were baffeled by me. i am 19 and am 31 weeks pregnant with my first child and am really worried about the labour as i have quite bad mc and the hospital are really clueless my mc affects every muscle in my body apart from my heart as far as we know. it scares me that when my daughter is born i will fall or drop her as my arms go quite weak at times and her being due in the winterdoesnt really help as ive found mc affects me more in the cold.

Welcome Lauren! If you read back through the posts you'll find lots of stories about our pregnancies and births with MC. Hormones from pregnancy do make the myotonia worse but labor varies so much from person to person. It is safe for you to have an epidural without epinephrine added, but do alert the anesthesiologist about your condition because some drugs and anesthetics given during labor would not be safe.

Have you had DNA testing to confirm that you have myotonia congenita? What you're describing sounds much more like myotonic muscular dystrophy, especially if your heart is involved.

Also extreme weakness is not really association with MC, but is common with paramyotonia congenita (a sodium channel disorder) and with myotonic MD. It is important for your sake to be sure you have the right diagnosis because treatment is different for these conditions. Let me know if you need help finding a doctor for a second opinion.

Jan

Lauren, I just wanted to say that I wasn't sure if you meant all your muscles are affected except your heart or if your heart was also involved. With myotonic MD there are usually early signs of cataracts, problems with the GI tract, heart conduction abnormalities, thyroid dysfunction, etc. It's really a multisystem disease that also happens to feature myotonia.

However something like paramyotonia would not affect your heart but could make you more sensitive to cold than MC, and the weakness would also be an issue. If the doctors thought you would be in a wheelchair that would more likely be paramyotonia. I'm glad you've been able to beat their predictions!

Jan

Hi Lauren,
I was diagnosed with MC when I was 13. At age 19 I had my first child. During the pregnancy the MC was definately a lot worse. I am not trying to scare you or worry you. But I was in labor for over 20 hours and then they still had to take my daughter by C-section. I had 2 epidurals. It took me a long time to come out of that and be able to hold my new baby. I was in the hospital for 4 days. The one thing that my hospital made sure of was to have several pediatric doctors and nurses on site when my baby was born. I only got to see her for a few seconds before they wisked her off to make sure that she was alright. And thank god she was. Absolutely nothing wrong with her.
At age 21 I had my second child. My labor was totally natural and a total of 3 hours long. Out of the hospital 12 hours after my sons birth. This did happen to be a different hospital, but I really don't see what difference that would make.
No matter where I go, I have only met one person that has MC. I am not even sure that is what he has because I believe his does affect his heart and breathing.
One last thing for this message. I tried what Jan suggested about cutting out pottasium in my diet. It has not been easy. But I truly think that it has helped. Also watching sugars. I have lost 10 pounds in the last week. . I have a lot more to go. But at least I am feeling better and not hurting and cramping as much.
Good luck and try not to stress to much. I know from personal experience that it makes out problem worse.
Take Care,
Dory Ann

Hi Lauren,
I had no clue what was wrong with me when my son was born almost 27 years ago - I just thought I was a klutz. So I was very deliberate in everything I did with him, and almost unconsciously was always loosening myself up, to be ready if I needed to move fast. I never dropped him or endangered him... You'll see - once you get used to it, you'll be a natural! Lois

Lauren

I am 31 with three kids and experienced the symptoms of MC as a child and recently was diagnosed.I wanted to tell that I had dream pregnancies. I had natural labor with my first only lasting 5 hours and 20 min of pushing. I did have stiffness in my legs during my contractions something my friends didn't have so I am sure it was the MC. My second pregnancy was twins that I carried 4 days shy of full term and had a c section w/ a spinal. I was up and at the zoo 9 days later. I fell once on stairs( i think I was wearing shoes I shouldn't have been) with my son but didn't hurt him. I try to realize my limits and I am extra careful because of it. I am sure you will be fine. Stressing makes it worse so relax and enjoy the wonderful time in your life

Jessica

hey thanks for the help, no jen it doesnt affect my heart i have had numerous amounts of tests run on me growing up, seen loads of doctors and for a period of about a year ihad blood tests every 2 weeks was supposed to have another dna test ran on me a few months ago but my doctors and i decided to wait untill after my baby was born as they are planning to try me on a drug i havent been on before.