I'm 21 years old, diagnosed with Thomsen's disease when I was 16 after thinking I was a freak all my life. I fight the symptoms every day and most days I win ;) I joined the army at 18 and was discharged after questions were asked about why I couldn't move from rest or get up the stairs quickly. Years pass and now I work in the oilfield and I'm a volunteer Fire Fighter. It amazes me each day when I go to work or to a fire scene and I do things that I physically couldn't do years ago, I'm stronger now then I've ever been physically and mentally and I want to share my short story with all of you to hopefully bring you're hopes up if you're feeling down. My doctor told me when I was diagnosed that I'll live a long "normal" life and I have fought every day to prove that statement wrong. I will settle for nothing less then an extraordinary life because it's mine and I control my destiny. As do all of you. My plans for the future include training to technician level in search and rescue, rope rescue, and swift water rescue and joining Texas task force 1 in order to respond to incidents like the recent tornado's in Oklahoma, or hurricanes such as Katrina. That's my story so far, it's nowhere near over yet ;)

Type of Myotonia: Thomsen's

Country: Leming, TX

Garrett,

Thanks so much for sharing! The same thing happened to my sister and one of my daughters. They had a lot of trouble in their teens, and then it just disappeared with only minor stiffness now and then. I sure wish I knew what the variables were!

I love anything having to do with water. I seem to be more sensitive to cold now, but part of that is related to another condition. I was a lifeguard and would have loved to do search and rescue.

Many have said here that staying in good shape physically is one of the best treatments for MC, even if you feel worse at first. I think that's probably true for most.

Hope you continue with your extraordinary life. We need role models like you for kids just getting diagnosed and feeling hopeless and depressed.

Jan

Type of Myotonia: Thomsen's

Country: USA

Jan, the stiffness is always there, I just keep moving all the time and hide the symptoms from others real well. Cold still gets to me real bad.

Type of Myotonia: Thomsen's

Country: Leming, TX

Hi Garret:

I had military and search and rescue ambitions as well when I was younger but I had to give them up because I have Becker MC, and while the severity of my myotonia has significantly lessened as I got older, I started to have trouble with muscle weakness and stamina issues, that seem to be common in those of us with the recessive form of the disorder.

I have about 6-8 hours of "active time" at the moment, where I feel relatively normal. I try to get my exercise and necessary chores and activities done within this time frame, but at the end of the day my back muscles begin to cramp up and burn and I really just want to go home and let my muscles rest.

Type of Myotonia: Becker

Country: USA

Hey Garrett, I'm 19 and studying medicine at the moment and was hoping to join the army as a medic, does this mean I won't be able to?
P.S and keep up what your dong it sounds awesome! i've never met anyone else with myotonia, so its really cool to hear what other people are up to! Philippa

Type of Myotonia: Not sure

Country: England

Philippa, I don't know what the exclusions are in England regarding military service, but in the US if you have confirmed myotonia congenita you would not be allowed to enlist.

Jan

Type of Myotonia: Thomsen's

Country: US

Hi Garrett....I read your post, and wanted to share with you that I served 12 years in the US Navy, achieving the rank of YN1(SW)(surface warfare specialist), and also served in Operation Desert Storm.....I joined the Navy when I was 20, and had the same types of difficulties with the physical rigors of the military.....my problem was....I didn't know I had MC....had it been diagnosed, I'm sure I would have been discharged. I didn't find out I had MC until I was 50 years old, and was able to see a neurologist at the VA, who diagnosed me....it was quite a relief, knowing that there was something with a name to go along with my symptoms, and that I wasn't just "clumsy"....anyway, wanted to share that, and thank you for signing up to serve our country....and as a Firefighter, you are doing just that!....from a proud Veteran, Thank You!

Type of Myotonia: Beckers

Country: US