Hi Jan,
I really hope you are doing well. Winks to you.

I have something I am very curious about. If I recall, you mentioned once about filling a stadium with those with Myotonia Congentia...Thomsen's, Becker's, Etc.

Can you give me the insight on that information or all of us again, please. Specifically, I was wondering in terms of filling a stadium, how many would have Thomsen's? How rare is it really?

Again, I hope you are feeling better. Hugs

Has this stadium got stairs??

Hi Jan,all joking apart.can you explain why standing still is the most stiff provoking thing to do...after standing ironing for instance,i cant walk up the stairs for the life of me...the times i have tried to carry ironing upstairs and ended up face down in it with carpet burns to the shins. cant do stairs without a rail to hold onto..when i was young and reckless,i thought i could take a run at stairs and reach the top before the stiffness got me...wrong.

In a nutshell, the extracellular potassium levels rise during a period of inactivity with MC. This pH shift toward alkalinity in the muscle cells makes contractions prolonged when we start trying to move again.

The intracellular pH begins dropping as we start using the muscles and what they call the "warm-up phenomenon" kicks in. The higher the extracellular potassium, the longer it will take for that pH to drop and for the muscles to start working properly.

Two things that can really affect that level of potassium is high amounts of potassium and potassium additives in the diet and sugar in the diet which increases insulin and causes more potassium to build up around the cells.

If you start flexing your legs in place before you begin walking it will help with the pH shift, but if you just start moving without warming up the muscle you will get a lot of face plants!

Jan

I think I made a reference to Meadowlands Stadium which holds 82,000 people.

The best estimate I can get of the incidence of myotonia congenita (both types combined) is 1/16,000. In Scandinavia they say 1/10,000 and Sweden estimates 6/100,000. So we're close anyway.

So that would mean that statistically in a stadium full of 82,000 people, 5 would have myotonia congenita. That's pretty rare!

Jan

Jane,

It's good to hear from you! I'm glad you're doing better - the diet really does make a difference for MC and PMC.

The periodic paralysis website has so much great information and the people on the list have been very helpful when I refer someone over. Have you found a good doctor to treat your disorders?

Jan

Jan,
Since I knew about this website and the PP web, I have been able to ask questions and get as much relevant information as possible. I do have agood Neuro he is Prof Hanna at Queens Square in London he has done much research on PMC and I see him once a year. I also see a neuro at my local hospital so dc's are keeping more of an eye on me.
I moved home last year and had to leave my GP behind. She was vey good and it has taken a few trips tgo my new GP to get her a better understanding of me but we will get there!
Moving was the best thing, I now live in the country side with fields and lovely walks as I now have a little hearing dog and we are inseperable. I am more relaxed and of course that helps.
As I am the only one in my famuily to have MC or PMC I have put a post out on a genology site on my family name on my mum's side. I understand there were family members who emergrated between 1911 - 1918 to NZ and apparently there is a family in NZ with PMC or MC. It would be great to contact a distant family memeber with this. I have one person in contact who may have some info.

Jane uk (PMC, deaf, benign chrorea)

Hi guys,
do the health institutions in UK have any financial help or benefit programs for people with myotonia?

Thanks in advance!

Pete

Type of Myotonia: congenita

Country: uk

Pete,

I think if anyone would know it would be the Muscular Dystrophy Campaign people. Here's the link to the myotonia page on their website:

Muscular Dystrophy Campaign

Here's their contact information:

Muscular Dystrophy Campaign
61 Southwark Street
London SE1 0HL

020 7803 4800
info@muscular-dystrophy.org

Type of Myotonia: Thomsen's

Country: USA

Hello Pete this is Pete and I have MC too!

Spooky eh?

There are no dedicated benefits for people with Myotonia Congenita.

You can apply for Disability Living Allowance but it is not guaranteed that you will get an award. It took me 30 years and I have Spina Bifida as well. Also, the British government has a bill before Parliament that is likely to be passed and will enforce drastic changes to disability benefits from 2013, reducing both the amounts paid and the number of people who receive it.

I expect to lose my DLA.

I do have a Blue Badge for the car, however, that proves pretty usefull!

Jan's link to the Muscular Dystrophy is worth following. MC is grouped with MD even though they are different conditions and the people who run the site are well organised and informed on benefit issues.

Type of Myotonia: Becker's Variant

Country: England

Hi there - In my searches, I have seen a couple of different numbers of statistical probability of occurrence. Somewhere, but I don't remember where, and the stupid computer wiped out our entire catalog of bookmarked sites (!!!), I read it was 1:300,000. However, in checking with the NIH genetics library, it says that, world-wide, the probability is about 1:100,000, while in Scandinavia it is, as Jan noted, 1:10,000 - 10 times more common! Wow! Those people REALLY have to diversify more! LOL. I wonder if Thomsen's or Becker's is more common there... back to the intrawebs! lois

I wonder what treatment they have for it's people, it maybe worth looking into, anyone made contact with it's health center I wonder.

Thanks Jan

Morning Jan,and everyone,i really meant standing as aposed to sitting,if i have to stand in one place i.e. queueing,ironing or waiting for a bus,makes me more stiff than say, sitting when standing you are'nt moving but not relaxed either,maybe the muscles being tense enouph to hold you up but not really moving much is worse for them to get going,when you want to ,am i making much sense?..There's been lots of rain in England..damp not doing me much good either..grass is really green though,there's allways an upside. hope everyone is feeling well...xxxfrom the uk.

You are making perfect sense of this particular symtom, as you do I to experience a stiffness after sitting or standing for a certain period, with the weakness that follows you get more worried regarding an accident, I've spoken to my neurologist regarding a muscle relaxer and he prescribed Cyclobenzaprine 5 mg which I take 1 tab at bedtime, along with Mexiletine 150 mg in which I take 3 times per day, it helps somewhat, you must idenify your strenghts and limitations, I can't stand or sit immoble no longer than one & a half hour before I move, lifting and carry is hards as well, the important thing is to rest and not get over worked. You may also consult a physical therapist as well to do strench exercises.

I completely understand your fustration, but what you need to do in my opinion is pace yourself, try to relax time your contractions, for the most part your muscle will get back to normal in about 45 seconds after immobility, although this is a deep concern of mines going on my 50th birthday my stiffness is under control for the most part of my pacing, lifting and standing, under your body take the time to really notice yourself, after a couple of days you will have a better sense of your limitations, for instance I could walk 1 mile, return with 5lbs of sugar and completely become stiff as a board about a half a hour, with medication I become loose and try it again the next day, to my surprise it happen again so I adjusted, I took a bue there and walked back, no stiffness nor weakness, this applies to just about everything, your diet plays a role as well, I keep my weight to 155ibs and I feel good, I added 9 pounds and felt extremely tried more often, just a few things to keep in mind, stay positive worrying isn't good for any of us, I wake up with NO problems and I don't get into them either.

I know just what you mean - standing waiting for a bus, or for a traffic light to change, would mean stiffening up and then either falling up the bus steps, or walking really slowly and stiffly across the street, in front of all those drivers wondering if I was taunting them - but I didn't want to fall down and then not be able to get up before the light changed - How terrifying!! Lois

I feel the same way, I look for instance living in the streets of NYC how fast the pace is, very stressful to say the least, now I'm in very hot sunny Tampa, Fl where you can walk at your own pace, to my surprise the stiffness and weakness is more worst for some reason, maybe it's the rain and or the more actitives I do, I do walk more than ever before, so I'll monitor this more and should know in several weeks. but overall I feel relax which is the bottom line to our condition, RELAX as much as possible. Keep me posted

This is very true I realized that although the heat maybe a bothersome, it became obvious to me that my centarl air conditioner is the cause, as for some of us the cold brings up stiffness for some reason, with this in mind I've set the themostat to a comfortable 81 degrees, along with short walks and strench exercises I have some pleasure, but still have fatique and weakness some part of the day, as such I pray and just take it easy, P.S. that's a great idea we all should form our own community and enjoy life, let me know if one exist. I was wondering if any one knows the effect of your CPK levels have anything to do with fatique.

Hi Howard - As you may have read in some of the postings, a lot of us have a problem with heat tolerance, mostly made worse where there is high humidity. When we moved from NYC to San Diego, I noticed some decrease in some of my most frustrating symptoms. They are still there, but usually easier to deal with unless it is humid, or I am stressed or scared. So, apparently, we have cold intolerance, AND some humid heat intolerance - so we should all start a big myotonic community in the desert, and become desert rats! Lois

How's this - a totally eco-friendly, green community, with windmills, solar panels, electric golf carts, and a big, heated pool and spa - and our own organic garden!? Well, I can dream, can't I? Lois