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Re: My Son

If you ask me, bed wetting and MC goes hand and hand. My son only stopped about a year ago...age 16.

Re: My Son

I think it has something to do with it as well. Only because it seems that it's difficult for him to just get right up and go. I have been told it's laziness, and I just don't buy that. Is there anything you have found that helps?

Type of Myotonia: sly_1998@hotmail.com,3

Re: My Son

I think it's important we don't say something is or is not related to MC. I can only speak for myself but I do not yet fit in a "bucket" as all my DNA testing to date has been negative. My neurologist indicated I may have a totally unknown type of MC and nobody knows what fits where.

I just don't think we know enough to say for sure that a symptom is or is not related to MC.

Type of Myotonia: ,4

Re: Correlation of Symptoms with MC

Here's my take on this subject...

When someone asks if there is a correlation or association of a particular symptom with MC first I look at the biochemical affect of MC and decide whether it could possibly cause the symptom. In the case of bedwetting, for instance, there is no basis related to MC that I am aware of since the bladder and sphincters are smooth muscles and MC only affects the skeletal muscles. A quick search shows that 5-7 million children over the age of 6 have problems with bedwetting. That's pretty common, so chances are very good that it's some other cause even if several parents on the forum report that their children had problems with it.

The same goes for symptoms affecting the uterus, gallbladder, intestines, endocrine system, etc. There is no biochemical basis related to MC for these functions to be affected. However they are all affected by myotonic muscular dystrophy so I think a differential diagnosis is very important when myotonic discharges show up on an EMG and these symptoms appear.

As far as DNA testing, myotonia congenita is really well defined now and the gene well mapped. I don't think we're going to see any new surprises. The labs like Athena and Fullerton do see new mutations frequently and try to determine if they are harmless or have a clinical significance. They are then published and shared with other geneticists. If you have a negative test for MC and you have had the testing done at one of the labs that does the gene sequencing you can be quite confident that something else is causing the myotonia. There are several other possibilities like hyperkalemic periodic paralysis, paramyotonia congenita, potassium aggravated myotonia, myotonic MD, etc.

If I were basing my responses about correlations on my own symptoms, then I would say that MC could cause anemia, dislocated joints, severe abdominal pain, renal cancer and migraines. Over the years we have discovered that each of those is caused by a totally unrelated genetic defect ranging from enzyme deficiencies and mutations to altered immune function. That's why I'm constantly encouraging people to push their doctors to look beyond MC and test for other conditions as well.

MC basically does one thing...it keeps the skeletal muscle from returning to it's repolarized or relaxed state as quickly as a normal person. Period. No other issues. Because of this delayed repolarization we often push against the resulting stiffness or seizing and experience microtears to the muscles and sometimes even extra joint wear that can cause pain and cramping. We also are more sensitive to potassium and the effects of insulin since they prolong the repolarization by affecting the electrical charge of the cells. Same with certain anesthetics and chemicals like 2,4-D found in weed killer or certain medications like statin drugs. MC is not progressive and does not generally cause weakness...that is much more likely with the other ion channel disorders.

The reason a condition like myotonic dystrophy is so complex and has so many other symptoms is because it is a totally different type of gene mutation that is coding for a trinucleotide that goes past the normal repeat sequence. They still don't understand all the implications but it is considered a multi-systemic disease.

I know I sound like a broken record when it comes to many of the symptoms people claim they experience and the doctors blame on MC, but I have to say that those who pursue further diagnoses constantly get back to me and confirm that it was another condition causing the symptoms.

Jan

Re: Bed Wetting/My Son

I will say that I enjoyed all the info that was shared on this topic. And, I have to agree that laziness is definitely a contributor to MC bed wetting. However, the laziness is really not "lazy". It is that these kids are in so much pain to get up after being in a stiff position sleeping that they feel life is easier if they wet the bed and have mom and themselves deal with it in the a.m. and not endure the pain at night. As much as it was a chore everyday for over 13 years...I was glad that my son was not in pain in the middle of the night and got a good night sleep stress free. Sleepovers were not an interest to my son so I was lucky to have him home every night or a friend over that he could hide it from. There is medication to stop the wetting but I am really against medication if it is not life threatening so I did not pursue that avenue. Good luck and keep us posted. It is nothing to be embarrassed about. Some kids pee in the bed because they are afraid of the dark. Some kids just have blatter issues that they can't control. Our kids are just in so much pain during the day that they want an evening of peace and rest. Gotta love them...they will go to college and not wet the bed....that I can promise you.