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Muscle WEAKNESS , Working Out

Hi, I was surfing around when i stumbled on this site and i have to say its unbelievable.

I have some questions about Myotonia since i was just recently diagnosed. The Neurologist i saw didn't specify which type of Mytonia i had so i hope you can help with some info, and some other questions about Muscle WEAKNESS.

- I'm 16, My symptoms as of now aren't as severe as some of the stories i'v been reading , but I'm not sure if that would change as i get older.
Non of my family members have Mytonia except my little brother who is 7 now.
I also have a sister, 10years old , but she doesn't seem to show any signs.
- As far as i can tell the Myotonia has stayed constant

- I'm Currently taking Mexiletine 250mg

- I'm 5'6 , 120ib, I look fit, like many people with this disease. ( If this helps with the muscle weakness question)

Questions-

1. Do i have Thomsen or Becker?

2. I have muscle weakness before stretching , and even after, it takes a while of doing warm ups before i feel I'm using my full potential. I've recently started working out.

3.While working out, is it easier for us to gain muscle??

4. Is Muscle weakness a common symptom in people with Mytonia?

Thanks for any help anyone can provide, I would appreciate it if you can answer in detail about the muscle weakness question.


===Anyone try p90x :#?

Type of Myotonia: Not Specified.

Country: United States

Re: Muscle WEAKNESS , Working Out

Welcome! It sounds like you have Becker's MC since the only other affected family member is a sibling. You can pass one of the recessive genes on to your children, but since it would take another recessive gene from their father to cause symptoms, the chances of them having it would be almost zero.

Muscle weakness is fairly common in MC. I think it is probably a combination of damage to the muscle cells and shifting potassium levels. The weaker you are, usually the lower the potassium. It's kind of a rebound effect in response to the high levels that build up from the chloride channel defect. When you're feeling very weak you can try drinking a little orange juice or eating some nuts or other foods with a little potassium (too much will make the stiffness worse). But I have found over the years that what helps me the most is making sure my insulin levels don't get elevated, and the best way to do that is to avoid sugar. I've been on a diabetic diet for over 30 years and the only time I get weak now is when I eat something sweet.

I think working out is good as long as you really back off when you feel the "burn" since that's a sign you are damaging muscle cells. A normal person's body would repair the damage with a type of muscle fiber called Type IIB and then you would be stronger. But we can't make Type IIB fibers that survive, so we never really adapt to exercise the way we should.

P90X is awesome, but probably too extreme for us. Weight training is fine as long as you use lower reps and focus more on the motion away from your body...do it very slowly so the muscles can relax and not "rip". Cardio is great but it can be painful for the first few minutes until you hit aerobic mode. We don't seem to store glycogen properly in our cells which is what the aneurobic first minutes are using.

Many people with MC play soccer and tennis and run track (medium-long distance, not sprints!). As long as we can keep moving we're usually okay. I used to do a lot of biking and hiking and I was a lifeguard when I was in high school. I did have to be careful about cool water - it would really stiffen my muscles.

You might want to talk to your doctor about monitoring your potassium levels for a while. If you can get blood drawn when you're feeling weak it might help you to know if it's related. It is important for the lab techs to not use a tourniquet when drawing blood for a potassium test. They will probably argue with you, but it can make the levels look higher than they really are.

Jan

Type of Myotonia: Thomsen's

Country: USA