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
View Entire Thread
Re: Long-term effects of MC

Molly:

Certain hormones are known to make MC worse, as is pregnancy, especially in some mutations. How the disorder expresses over time seems to vary from person to person, but some people I have conversed with seem to struggle more as they age even if the myotonia part of the disorder lessens. I think one reason this is, is the disorder wears on people, maybe in a similar fashion to how certain sports wear down athletes, like body building, wrestling and gymnastics.

While the myotonia part of my MC has lessened considerably with age, I've developed far more problems with weakness/stamina/muscles fatigue, and pain/burning.

Both of my mutations are overlapping recessive/dominant, and while I'm the only one in my family with full on myotonia, and who has a diagnosis, I think my mother is also affected on occasion. She has had her calves/toes lock up on occasion, and she once confided that when she was younger, her stomach muscles would "sometimes lock up and take a few seconds to relax" after she coughed. She had struggled with muscle pain, especially in her back, for the past few years and has a diagnoses of fibromyalgia, but I think maybe it is an atypical symptom of MC.

I have hip problems which I think are due, in part (but not entirely) to the MC. I do think it can cause the joints to wear abnormally in some situations.

Type of Myotonia: Becker

Country: USA

Re: Long-term effects of MC

Hi Molly and Jenna,
I have Becker's myotonia and am now 56 years old. Definitely in my case there is a hormonal effect. At puberty I noticed my symptoms were worse in the second half of the menstrual cycle. Since menopause my symptoms have worsened again, and I now have to take mexiletine hydrochloride. Previously I didn't really let my myotonia stop me doing anything as it was fairly mild. By taking the mexiletine I can get back to that state. I only take a very low dose, 50mg twice a day, mixed up by a compounding chemist.
I know what you mean about husbands, but I guess unless they can feel it they're not going to understand. I found giving my husband an article written by a doctor with myotonia changed his perspective a lot. My labours were long and slow, but contractions were 2 mins apart right from the start. Not sure if this was relevant.

Type of Myotonia: Beckers

Country: Australia

Re: Long-term effects of MC

Relieving the tension helps return joints to normal mobility.

Yup, subluxation here, too--my shoulders subluxate sometimes, and my hips get pulled out of joint when I'm pregnant by muscle cramps.

A GOOD deep-tissue massage therapist can make all those muscles relax, and a good exercise program can keep them that way so that you only need the therapist once a month or so. This protects joints form injury. MC isn't progressive, but joint damage can be!

And apparently, pregnancy make MC worse in pretty much everyone. Wheee. But it gets better after.

Type of Myotonia: Thomsen's

Country: USA