mytonia congenita

i too have "thompson's disease" as we know it, my younger sister actually has it slightly more than i do. you get varying types of it, the one that improves with age and the one that gets worse. we are lucky enough to have the one that improves with age. for females this condition gets worse during pregnancy. i would like to know whether this actually increases high blood pressure during pregnancy?

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I have a mild form of myotonia congenita as did my father and grandfather. I was getting divorced at the time of pregnancy and I was incredibly stiff and at times just seized up whilst walking etc. After many tests, the doctors decided that I had Thompson's Disease or myotonia congenita. My oldest daughter is 21 now and has a very mild form and the younger one of 12 suffers terribly with muscle stiffness and I am trying to get doctors interested in her condition. I must admit that I did not notice an increase in blood pressure during pregnancy and I had to have a caesarian for both babies. The second pregnancy with my second husband was a lot easier without all my muscles seizing up. Obviously stress makes the myotonia congenita much worse as does just being pregnant. I was also very anaemic during both pregnancies.

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this is very interesting. My sister is expecting a girl, i will tell her about your family history and that both your daughters have it. Both our dad and grandfather had it slightly too. I have 2 boys, so there is no sign of it in them.
thank you

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I went through all of my very sporty school life with it and thought that the slight hesitation just as the gun fired before races was 'normal'. I had this hesitation with all races in swimming or running. It never stopped me and it was only when I was extremely stressed, getting a divorce and being pregnant at the same time that I actually went to a doctor. He thought it was very rare to have as a woman and had not seen a case like mine for seven years and once I mentioned this to my father, he said,' oh, yes, I also have that hesitation and so did my father.' This never stopped me from doing sport but it is stopping my 12-year old daughter as she trips quite often and staggers around like an elderly person after sitting for a while and then standing and trying to walk. She even had an accident at a water park in Majorca last year when she just fell over and could not put up her hands to catch herself. Luckily there were no broken bones but it did entail a lot of blood, a swollen nose and a trip to A&E. My eldest daughter, 21, does not have a very severe form of myotonia congenita but then she was never very sporty anyway. Perhaps she will notice the stiffness if she falls pregnant one day but hopefully the pregnancy will go well and her children will not suffer at all. Originally in South Africa the doctors said that this condition is mostly seen in men and they usually have male-pattern baldness as well. I have def. not got this problem (yet)! All three of us suffer with depression so not sure if there is a connection or not. My father also tends to have depression although he won't admit to it!

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I have myotonia congenita and so does my two younger brothers.. The disease came into my family through my great-grand-mother
in the mid 1800's.. My grandfather had myotonia congenita and also my father.. My oldest son and daughter also have it.
It skipped my middle child (my youngest son)..
My daughter was just about free of the disease during her three pregnancies.. All three of her boys do not have it.. My oldest son's
oldest and youngest daughter have myotonia congenita.
In most of the world ,one in one hundred thousand have the disease .. However in the country of Finland the ratio is nine in one hundred thousand..
If I may, I would like to share my experiences with myotonia congenita with you ..
My name is Alex Booth and I retired from General Motors in 1999.. I worked for AC Spark Plug Division in Flint Michigan and at the
present time live in Cleveland Tennessee. It would take many pages of writing to say all I want to say.. I will be seventy-five my next birthday so I don't have much time left to share my experiences.
My E-Mail address is ajonrockytop@charter.net.. If you would like to discuss the disease send me your phone number and I will
call.. When you have myotonia congenita you think you are the only person in the world with this condition and it feels good just to
talke to another person.. About a year ago , I talked to a young man in New Jersey and it was the first time either of us had talked
to someone outside of our family with the disease..

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this is the first time i have spoken to anyone outside of the family who has it. i have not yet encountered anyone in my life in South Africa other than my grandfather, father and sister who have it.
so glad to hear that it is not an unknown disease.
thanks for all the information

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I have done a lot of research on myotonia congenita .. There are two varities of the disease.. Thompson's and Becker's..
I think I have the Becker's variety.. There are also over 85 mutations of the disease.. Myotonia congenita has many degrees of
afflication ,from very mild to severe.. Some forms of the disease start at birth and other forms aren't noticeable until puberty.
This is why it is difficult to explain myotonia congenita in just a few pages .. I am open for discussion with questions and answers
and I am still doing more research to learn more.. New things are being descovered about the disease through the Muscular
Dystrophy Foundation..

I checked with my daughter on her pregnancies and she said the disease was difficult during this time.. It was during the time when she was nursing ,when the disease was almost nonexisting. At this time the hormon changes in her body made the condition almost disappear..

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wow, interesting and very helpful information. we have Thompson's Disease. Mine was pretty bad growing up, and also varying degrees of it too. It still didn't stop me to play netball at school and did karate as an extra mural activity as a teenager. Also continued gyming in my early 20's. Once I fell pregnant at 26 this is when it was at its worse and then again when I fell pregnant again at 28. But now I have it, but a stranger won't be able to tell that I have it unless I do something that makes them query my delayed response when getting up to walk, but I have camouflaged it over the years that no one can pick it up.

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With Myotonia Congenita ,we still had good athletics in our family.. My younger brother had two football scholarships and broke
two track records and one foodball record while in High School.. For several years he held the kickoff for a touchdown record and the one hundred yard dash record.. I played some football and so did my oldest son.. My daughter ran track ... I keep it a secret
when I joined the Air National Guard and later the Air Force . I also didn't tell General Motors when I was hired..
Some time after exercise I will almost be paralyzed.. I could never run over three miles without my body seizing up.. Eating Beef
can also make the disease worse.. I think it is the hormones in the animals.. Hot humid weather is very hard on me and chlorine in a swiming pool....

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Hi Alex

Your's is definitely far different to ours. We can't really do any sports as our muscles seize up before the time and takes a little longer to "warm" up before we get going. In our condition, cold weather makes it unbearably difficult at times, any shock to the system makes us seize up, we were even told that if we were to be unexpectedly thrown into a pool, our muscles automatically seize up due to the shock/adrenaline and it could lead to drowning. This I can say is true, as this has happened to me as a little girl when I went for a swim at the school pool during Physical Training class that before I knew about our condition that I was thrown in and I really struggled to get myself up again. A friend of mine happened to swim pass at the time and she helped me to the side of the pool for me to hang onto.

Interesting to learn about the variations of this disease.

Have a good weekend, I take it you are based in America? What is the time difference between us?

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For me swimming in a pool for a long period of time mades Myotonia Congentia severe.. I think it is the body's reaction to the chlorine..
Cold weather is very good for my condition.. This is why I think the Myotonia Congentia I have is the Becker's variety..
After retiring , I moved from Flint Michigan to Cleveland Tennessee .. Moving from Cold to Hot was not good for me..
Just Hot isn't too bad but Hot and Humid makes the condition worse...
Somehow all of us who have Myotonia Congentia are related.. In the past our blood lines have crossed.. My nephew did
a DNA check on our family and most all of the markers were in the British Isles with a marker from the Scandinavian Countries..
With the family names Booth, Holden, Devall,and Davis I am more British than a lot of people living in Great Britain.
My Family has been in America since the early 1700's...

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Hi, Alroy

Thanks for your comments, very interesting. I am South African-born, living in the Isle of Man and after 17 years I still prefer hot weather. We always take hot holidays and I don't find that I am stiff at all but that could be because I am not stressed whilst on holiday. I have not noticed if my daughter is worse in the heat or the cold but I will take note. Originally my father's family were from Scotland but we also have a lot of Irish, German and Italian in our blood as well. I am very stressed at the moment as my mom who lives with me has fallen and broken her arm, I am left to do all of the household chores (I am normally at work and my mom runs the house) and I am exhausted. I am due to go back to the doctors as I think my thyroid is very underactive again. I will be on tablets for this for the rest of my life but sometimes I can take less and now I think I am due to take more of the Thyroxine. With all the stress now I am stiff getting up from a sitting position and my one leg drags a bit and I sometimes have to physically pick it up to 'get going'. I do find that if I jog (not very often) and then get tired (exhausted) my right leg gets 'lazy' and drags a bit too. I can still do everything that I need to but it is a bit comical to see, really!
Take care

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