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It's Becker's MC - Only Took 40 Years to Confirm!

I was diagnosed with MC as a child but the variant was never specified. I have asked my consultant but I never received a clear answer.

Just recently tow events occurred that have helped to confirm the diagnoses, first I found a medical paper written about me as a patient with MC published on the internet. Second, my brother has had some DNA testing done as they were worried that his son might have MC toot. The geneticist requested as many family members as possible participate by supplying blood samples. The results of this most recent test confirmed that I have Becker's variant.

Curiously, I have complained of muscle weakness for most of my life but it never seems to have been provoked much interest from my doctors. I know having Becker's MC is nothing to smile about really, some of the symptoms are not particularly encouraging, but in a way it helps to know exactly what it is that you are up against. In fact, I was recently awarded a disability allowance for the first time after 20 years of trying. I think the fact that I was able, for the first time, to be specific about my condition helped. No thanks to the doctors there though.

Re: It's Becker's MC - Only Took 40 Years to Confirm!

Pete,

It is nice to finally have a definitive answer, and it does help the doctors to take it more seriously, especially if you need surgery.

It's good that you have Becker's MC in that your nephew won't have the symptoms, but it does tend to cause more weakness in particular with certain mixed mutations. We tend to see weakness more in the sodium channel disorders like paramyotonia congenita, but if the response to insulin and potassium are more heightened this will cause weakness in anyone.

Glad you were able to get the disability - unfortunately it doesn't help us in the US to have the myotonia congenita diagnosis. There have to be other conditions along with it to qualify. Funny how they don't consider it important for those purposes and yet for years we were denied private medical coverage!

Jan

Re: It's Becker's MC - Only Took 40 Years to Confirm!

I have had too much surgery already and have some more on the horizon, fortunately I'm labelled as at risk for anaesthesia due to the MC, just that they never defined which variant.

I've been applying for disability allowance for about 20 years now and even though I also have Spina Bifida Occulta it was only when I got the Becker's confirmation that I got the decision in my favour.

It's a shame that MC is not recognised for the debilitating condition that it really is.

Re: It's Becker's MC - Only Took 40 Years to Confirm!

Glad things worked out for you. I am surprised that anyone even recognizes MC as disabling. I feel like cr*p all the time, and no one understands. After a rough day at work, I can sleep clear through the next day, if I allow myself. Allow is the magic word here!

If I am off work, I feel darn good, energy wise.

So you rest up and enjoy your reprieve from misery. Lucky you! :)

Re: It's Becker's MC - Only Took 40 Years to Confirm!

My symptoms have always been severe but recently they ahve gotten worse. I don't think anyone doubts that I'm disabled when I try to move whilst the myotonia has hold of the muscles.

That said, when I am feeling good I sometimes feel a bit of a fake myself, but it never lasts for long. Using Mexitil helps a lot though.

I also get tired from just a 'normal' day too. When you think about it trying to do a 'normal' day and push through the myotonia why wouldn't you feel tired?

Re: It's Becker's MC - Only Took 40 Years to Confirm!

Quoting Pete:
"When you think about it trying to do a 'normal' day and push through the myotonia why wouldn't you feel tired?"

Agreed!!!!

Re: It's Becker's MC - Only Took 40 Years to Confirm!

Isn't THAT the truth! Lois

Re: It's Becker's MC - Only Took 40 Years to Confirm!

Hi Pete,
Congrats on your finally getting assistance. I also just got mine in February of this year, but I have spondylolithesis (bad back) and heart arrythmias, as well. I also have Beckers type.
I have twin 11 year old boys that I am trying to keep up with and I can tell you that I "conk out" right after dinner. I feel guilty that I can't take them biking and play soccer with them, and I push myself too far.
I am having alot more pain and stiffness, lately. My hands are extremely painful and it takes me a while to be able to stand up straight, after I stand up. Do you think I should start taking the mexetil, or try something else first?

Re: It's Becker's MC - Only Took 40 Years to Confirm!

Hi Sue!

Mexitil is a great benefit to me, it does not suppress the MC symptoms 100% but it certainly helps, not just with the stiffness but also with cramps and twinges which seem much less severe than they used to. I'm also less tired than I used to be at the end of the day too. However, this relief is a side-effect of the drug which is usually prescribed for arrythmic heart conditions.

My son is 11 and a keen football player, it hurts not being able to kick a football with him, I'd fall over if I tried, but he's very understanding and quite happy as long as I'm there to watch his matches whith his Sunday League Boy's Team.