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Re: Getting started....late

Hi Brian:

Your symptoms sound a lot like mine when mine were more severe. I have Becker MC but as Jan said, you should probably have the DNA test. There are actually a few different disorders that can cause myotonia or myotonia like symptoms and knowing exactly which one you have might help you optimize the treatment.

When I was at my most severe, in my late teens, I was also overweight, and I feel losing the weight contributed to a significant reduction in my symptoms even though the activity increased my symptoms for a few months. I've also learned to not work against my own muscles. If I stand up and my legs lock, I usually wait until they relax before I try to move. And I try to avoid leg exercises that require forceful contractions, in favor of more low impact things like walking. In fact I've found walking regularly to be the most effective exercise at reducing the myotonia even though it used to tend to make it temporarily worse after the walk.

For an unknown reason I saw the myotonia drop off significantly in the Fall of 2007. Literally, one week I could not get to the phone in time from a sitting position, and the next week I could jump out of my chair and run. I have never found any explanation for this....then again I was myotonia free for the first few years of my life and it came on over the course of a week when I was about 9 or 10 so *shrug*.

But I'm by no means myotonia or symptom free. As I got older my stamina got worse and I've started to have more problems with weakness, and that seems to impact me more than my muscles locking up. I've often thought I wouldn't mind teaching but I know I don't have the stamina to stand up in front of a class for an hour or two and write on the board and I've fatigued my upper back and torso muscles to the point of paralysis before. That's not typical of MC but that's what happened.

But anyway these disorder have high phenotype variability, meaning the severity of symptoms vary widely from individual to individual even if they are from the same family and have the same mutations, so it's impossible to predict any progression or changes in your symptoms based on someone else.

As Jan said, if you do have MC, there is medication that is usually very effective at reducing the myotonia/stiffness. If they do suggest you try Mexitil/Mexiletine (one of the most effective medications for Becker and Thomsen MC), be sure to have them do a cardio workup first. It is first and foremost a heart medication and it's not without it's risks.






Type of Myotonia: Becker

Country: USA

Re: Getting started....late

Hey Jenna,

Thank you for the response! I've also noticed that when I gain weight the symptoms seem to be more severe. I am a big guy, 6'1 at 212lbs, and I know I can defiantly stand to lose some. I have been continuing to walk the track every evening as well as at work, and I'm still in the process of getting the appointment set at the MDA clinic. I'm kind of an impatient person, but I'm trying to keep level though it all.

I called my sister and she told me that she was diagnosed with Becker MC so I'm going to assume that my diagnosis will be similar. I teach for 8 hours a day on my feet. The only way I've been able to make it work out is if I keep moving. I walk all around the classroom the entire time. It keeps me from seizing up, but also leaves me tired and sore every evening. Getting out of my car when I get home and walking up the stairs takes some serious doing. As a benefit it has helped me keep the students in line since they know at any time I can be walking behind the workstation and seeing exactly what they're up to. My calves and thighs are getting HUGE though. I'm going to have to start getting my pants tailored pretty soon if I can't get them to slim down.

I really appreciate the explanation on the "high phenotype variability." I've been wondering why it is that my father could do 22 years in the army without noticing that he had any sort of MC.

I'm really hoping to find a happy medium between lifestyle changes and medication. I'm not a big fan of taking meds, not morally or physically opposed, just never have liked it. I've been reading a bit through the site, and looking at the things that have helped others and am going to start implementing some into my own routine. I suppose I am going to have to learn to stop working against my own muscles as you put it. I normally try to push through the stiffness, like I can out muscle my muscles.

Well thank you again for the response! You guys have helped me more that you know, and I appreciate every word written. This forum is a blessing that I'm glad I stumbled upon. All the best!

Brian

Type of Myotonia: TBD

Country: USA

Re: Getting started....late

Oh definitely don't push through it! It's futile, needlessly tiring, and is thought to be what causes the muscle enlargement.

Type of Myotonia: Becker

Country: USA