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
After those tests everything has changed

I am 14 and i was diagnosed with this last year, though i had noticed that my legs, arms and like every muscle lock up. I know that I loved sports and gym, but after that fall i took in basketball (i fell right to the floor when i went to run, and i cried though it didnt hurt, but i was embarrased because i mean who falls when they go to run?) That was enough for me and i went to get those tests done, (with the needles and electricity going through) and man that hurt so bad. Now it seems it even worse than ever, i warm up a lot, but no matter what i do i fall flat on my face! So i tried to do the try-outs for volley ball, and well lets just say it didnt turn out too pretty. So i have stopped doing sports. Also, i tell who i feel comfortable telling. i tell friends and my gym teacher, because i think they should know. i want to know if anyone feels as if their legs lock up because they're cold, anxious or scared,(when you need them most) so feel free to e-mail me please for some info on how to not lock up so bad.

Lindsey

Type of Myotonia: Ltimblin1@aol.com

Re: After those tests everything has changed

Hi Lindsey, I was never very good at sports because of this stuff, but I did not know what I had. I did not give up horse back riding, especially the English version. I didn't have to worry about falling down just falling off, and even good riders hit the dirt. I would suddenly fall sometimes and on one very cold snowy day I broke a leg. It took a lot of therapy to walk again. There are ways around things, and you can be active at something, the best to you. Rosa W

Re: After those tests everything has changed

Lindsey,

Your story certainly sounds familiar. One of my daughters with MC stayed involved in sports by being a statistician and traveling with the team. She really loved basketball but kept falling and finally broke a finger trying to catch herself.

If you get a chance, read back through the posts about diet. That has made such a difference for me and others who have tried it. It's tough to get off all sugar and watch the other triggers, but it was so worth it to me to have my mobility back.

I went from sounding like I was drunk when I answered the phone (tongue stiffness) and stumbling all over to being able to run up the stairs and jump up out of a chair without falling flat on my face. It's certainly cheap and worth a try. I still eat a lot of complex carbohydrates for energy (whole grains, etc) but can't touch anything with sugar, syrup, etc or it will come right back.

I keep hoping I'll get some time to make up a whole page on diet for anyone who's interested. After dealing with West Nile my brain tires so quickly I can hardly keep up with the day-to-day things around here like opening and sorting mail, but it's definitely on my to-do list!

Jan