Just thought i'd drop a short post, giving a quick story about myself....diagnosed with MC at age of 50. Did alot of amazing things...especially my 12 years in the US Navy, even serving in hot spots, such as Beirut, Libya, and lastly during Operation DESERT STORM.....the most interesting thing is...never knew I had MC, until i saw a neurologist at the VA, and after describing my problem in "baseball terms", he realized what my condition was.....He asked me to describe my condition, and I told him...."Imagine you're playing baseball...you swing the bat, but you can't run to first base, because as soon as you swing, you fall down"...He got a gleam in his eye....paused, and said I have MC.....the EMG (sp) test and blood test bore that out......it was finally a relief to me, that after 40-some years, i finally had a name to go with my condition...That's all I have for now, i'll check in from time to time......Thanks for listening.....

Type of Myotonia: Beckers (I think)

Country: US

Just an update from yesterday's post. I listed that I wasn't sure if I had Becker's....my wife keeps my paperwork well-hidden from me, but i found it today, and i definetly have Beckers. I was never aware that I had MC, and always did the "excuse" for falling down, i.e., tripped, was bumped into, and lost my balance, or simply, that I passed out.....even happened several times in the Navy....standing in formation, and get the Forward, March order....and there I am, not able to move...embarrassing to say the least, but those excuses I came up with worked wonders.....I'm relieved now that I don't have any more excuse....just a reason for my "clumsiness", and I now proudly use a cane wherever I go, just in case....

Type of Myotonia: Beckers

Country: US

Don, it's nice when you finally get that diagnosis. You had quite a military career! It's amazing you were able to do so much in spite of the myotonia, but like you said, the excuses can cover for some of the so-called clumsiness. I've even known some people who kind of take on a Jerry Lewis goofy persona and make it work in their favor :-)

Thanks for sharing!

Jan

Type of Myotonia: Thomsen's

Country: US

Another question:

Were you ever on a ship and if so, how did you fare in rough seas? There's an island out here that I've taken the express boat out to a few times. They usually go between 32 and 47 knots and I like to sit outside for the fresh air, but in the past, sitting out there was a commitment because between the cold, the wind, the seas, and the myotonia, there was no way I was going to make it back in. I would almost completely lock up. On one trip it was so windy that one of the crew members, a 170lb or so man, was able to lean his entire weight into the wind. On the last trip I took out there, over the weekend, I was able to move around the ship a lot easier due to the calm seas, good weather, the fact that this particular ship was a catamaran, and also that my myotonia is a lot less severe. There was a point where I had some trouble getting down some stairs and had to take my time but I think most of the trouble I had was due to the fact that the myotonia has probably stunted the development of some of my motor skills, rather than problems from the myotonia directly.

That reminds me, what do you call a guy with myotonia who's a snow crab fisherman?
A man overboard!

I know, bad joke, couldn't help myself :-)

Type of Myotonia: Becker

Country: USA

How do you feel you performed in the military over all with respect to others?

I wanted to join the Air Force but despite my efforts, I could never get into the right kind of shape to pass the physical fitness exam, and after a bad myotonic attack I came to realize things would probably not go as I would have liked them to had I joined. Sometimes I really wish I could have though.

A number of people have been diagnosed while in the military. MC is on the military's "no go" list and so I think their doctors are more aware of it. In fact we owe knowledge of existence of this disorder to the military because if they had never accused Dr. Asmus Julius Thomen's son of "malingering", he never would have spoken up about the unnamed condition that afflicted his family.

Type of Myotonia: Becker

Country: USA

Hi Jenna

I was in pretty good physical shape when I joined the military, a couple years after high school....I had lots of difficulty with the physical fitness regime, at first.... but even not knowing I had MC, I adapted...I made sure I was plenty warmed up before I had to peform push-up's, sit-up's etc....My only real difficulty, was standing in formation for long periods of time, and then not being able to move. I fell down a few times, but, as I said, I hid it pretty well....leg cramp excuse was one of the main ones I used to use....You are correct about not being allowed to remain in the miltary if you have MC.....but, mine was not diagnosed until several years after I was discharged. I was able to keep up, physically, with my peers, but it was NOT easy....and I "got by"....but I would never trade my military experience for anything in the world.....I got to see numerous parts of the world I thought I would never see, and did amazing things in my 12 years of service. Having said that, I wouldn't recommend trying to "get by" like I did.....I had many a painful episode, including receiving over 30 stitches in my head, and a cracked vertebra, when I fell trying to get into my bunk during a tropical storm...I didn't have the muscle strength to pull my self up, and ended up being badly injured..No permanent damage, but had I not had MC, I would not have fallen so much, trying to do things others can do with relative ease....Hope that answers your question. Take care.

Type of Myotonia: Beckers

Country: US