Hi Serena,

I too was the first in my family with this condition (that we know of anyway). My parents recognised that there was something amiss when I was very young (I'm 50 now) and at that time I went to so many doctors to find out was wrong you wouldnt believe it. Finally when I was 11 I went to the National Neurological Hospital in London (for 3 weeks of tests) where they finally came up with a diagnosis. Over the years I have tried various drigs with no success so decide c'est la vie and make the best of things.

No I am older most of my peers are more acceping (I must admit kids are not very forgiving and I did have somewhat of a hard childhood with mickey taking etc etc) with I guess more of a 'but there for the grace of god' attitude.

I have not really let the condition get in the way of things I do but do not go around telling everyone about it. Occassionally at work (I'm an environmental scientist) I have to let people know but rather than go into detail I tell them its similar to MS and then I usually get cut a little slack.

I have played sports since I was young and am a really good table tennis player and even scalped the Welsh No2 about 10 years back.

I am married with 2 lovely girls (16 & 20) who show no signs of inheriting the condition (Beckers - recessive) but who both know of it and are aware that potentially their kids could inherit it (so wont have to jump through all the hoops I did to get diagnosed).

I realise you little boy will find it difficult but its important to focus on life and remember that our condition is relatively minor compared to some of the things people have to deal with. I was in an industrial accident about 26 years ago (nothing to do with my condition) and was severly burnt in an explosive (40%) however Ithe toughness and resilience developed in dealing with this condition certainly contributed to my recovery and even when I thought I might lose on or both arms I was still trying to be positive (thought I could play tabe tennis with a bat in my mouth if I had too).

Because my parents didnt know what I had (until 11 or so) even they sometimes thought I was taking them for a ride and that was tough. Though you of course know that your son has a real physical condition and as such you will be able to support him to a greater extent than my parents could (though I do not in any way blame them).

Best wishes

Kev

Country: England

hi kev (3rd time lucky lol i keep deleting my reply for some reason)

wow you have been thru a right roller coaster, i bet you are an insperation to your wife and daughters and you should be proud of yourself xx

i do realise we are still lucky, my mind was thinking alsorts when we were going thru testing, my sons best friend was diagnosed with leukemia in the same period
i guess like you said im worried about my son being picked on as he is hypersensitive but i cant protect him from the world forever.

Luc seems to cope very well at the moment but i think this may be partly because he isnt truelly independant and i guess i probably protect him alot.
Did u 'feel' dosabled when you were a child, i really dont want him to feel he cant do anything he wants to do.

do you still get support from health care proffensionals now you are older??

sorry i keep asking you questions, i just wana know what we have to face for the future and how i can help him be stronger for having this condition

thanx for reading and i hope you have enjoyed the sun xxx

Type of Myotonia: unknown

Country: uk surrey

ps sorry for all the typo's ive just had a bout of vertigo always something this end lol xx

Type of Myotonia: unknown

Country: uk surrey

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