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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.