Dont mind the questions, thats what this forum is for so we can learn and share with each other.

Guess coz I am from UK there is a little more affinity but Jan has done a great job setting this forum up and is a lot more knowledgable on the medical/biology issues than I could ever be.

I dont bother with any support from health care professionals for the MC anyway. Unless someone comes up with a new drug there is nothing much they can do for me. Thats not to say you shouldnt get Luc to try a few of the medicines suggested in this forum (diamox etc) as if you are lucky he may be more receptive to them.

If you ever plan on getting to the North East you are all welcome to drop in for a coffee.

Oh yeah BTW I always plan and note where the loos in the pub are in case I get short and they are up the stairs.... one thing we have in common with the daleks is our hatred of stairs : )

Country: England

thank you

i used to live up north as a child, hetton-le-hole

i guess for us at the moment its a learning curve, im pushing for the genetic testing tho as i do think its important to know what we are dealing with (if we can)
its wierd how we seem to be given a diagnosis and then left to it, any other disorder and you get help/support

we live in a flat so luc has yet to find out what stairs are like... funny tho cos ive always hated walking up stairs if someone is behind me and i dont have mc lol xxxxx

Type of Myotonia: unknown

Country: uk surrey

Hi

I have paramyotonia, and 2 daughters. Unfortunately, I have passed it onto my youngest daughter who is 5, and starting school in August.

Found this site useful for school, and also the Periodic Paralysis Network site. Our symptoms don't "fit" into one condition, so highlighted what we thought was relevant.

It is a very difficult condition to describe. Hope you find some info that helps.

Paula

Country: Aberdeen, UK

hi paula xx my son is the first in our family to suffer from this so we are 'new' to it all.
do u guys get any outside help?? like physio or OT. im worried bout school actually as luc is bad when he is out in the cold

be good to chat to you, youi can find me on face book rena_smith40@hotmail.com, my pic is my 2 boys hugging xx

Type of Myotonia: unknown

Country: uk surrey

Hello Serena.

Sorry to read about your experiences with the pre-school.

I have quite severe symptoms that presented very early in my life. School was a struggle, especially going up and down steps and staircases but I just perservered; even got a school certificate once for perserverance!

I did play sports at school, in fact I loved it, but there was a price to pay; I really suffered with stiffness afterwards.

My then neurologist prescribed procainamide until I was 16 which must have had some effect because I always felt worse if I missed a dose. Currently I am on Mexitil but it's getting harder to get a prescription filled.

Life will be harder for your son, there's no getting away from that, but that doesn't mean that he can't still have quality expereinces. Despite my condition I have travelled throughout Europe, I go to rock concerts, I have a season pass for football, and I even flew an aeroplane recently! I'm married with two children and I've worked for most of my adult life, when I wasn't being a student at university that is!

MC is rare and it is frustrating coming across members of the medical fraternity who are completely ignorant of it, or those who get all excited because a case has come their way and promise all kinds of things and then deliver nothing.

Do not despair.

The future holds a lot of hope for us.

Type of Myotonia: Becker's Variant

Country: England

pete bless you for your message, just realised you replied xx

its great to hear an great story like yours, and gives us hope for our son, its gona be a hurdle for sure!!

enjoy life and thank you for helping me feel better bout my sons future xxxxxxxx

Type of Myotonia: unknown

Country: uk surrey

Serena, it is all about attitude.

My family and friends never let me play the cripple; I never got away with anything just because I had MC, but everyone also acknowledged it so I didn't end up doing anything that would have been stupid or dangerous just because of peer pressure.

Encourage your son to discover his own limitations, always be positive around him, accept that he'll never be a world champion at anything physical but do not doubt that he can be happy in this world.

Lastly, never forget that he's still an individual worthy of your love and respect and that he will reveal his own strengths, talents and character in time; the MC just comes in addition to all that, it is not what he is.

Type of Myotonia: Becker's Variant

Country: England

pete you are totally right, i need to look at luc the same i did before we found out, without the pitty, he doesnt even notice that much, its me, as its always been like that for him he knows no different thank you, he is still my gorgeous friendly, outgoing boy and i will encourage that to the full, ive even enrolled him in football club he was so desperate.. i hope he will be fine xx

Type of Myotonia: unknown

Country: uk surrey

Serena,

I think it's often harder on the parents than it is on the kids, especially if no other family members have had symptoms. The parents feel guilty that they've passed this on and can tend to be overprotective and fearful. Of course the opposite reaction can be just as harmful. Many of us were told we were just making it up to get attention!

I would encourage you to let him do as much as he wants in school, sports, etc. Just make sure the coaches and teachers know and let him set his own pace.

If he has too much trouble with something like football, then he can still be on the team in a different capacity. One of my daughters was a statistician on the volleyball team and loved it. The sports that are a bit easier on us are things like soccer, tennis, and longer distance track (no sprints, pole vaulting or hurdles, though!).

Pete, thanks for the great post!

Jan

Type of Myotonia: Thomsen's

Country: USA

Pity is a great inhibitor, do not give in to it. Like you rightly say, Luke knows no other life with his muscles; to him nothing has changed. The same applies with the guilt; it is not your fault!

I have never blamed my parents, I'm actually glad for them because otherwise I would not be here and then I would have missed a life time of fabulous experiences; like holding my own newly born son in my arms!

Type of Myotonia: Becker's Variant

Country: England