Beside the years between my 20-30 ( im 38 now)I have been stiff and clumsy all my life. But It was during my pregnencies I really understood that it had to be something wrong wich had to being checked out by a real specialist. I have mentioned my stiffness earlier to different doctors but they had never taken my concern serious. But this time I was stubborn when all it took for me was to turn around as I walked.
Anyway....the EMG test showed myotonia so now I´m waiting a couple of months for my DNA test. I really hope that my children not are affected of this....hmm Im the other hand reliefed that they finally took me serious and that I have found you all!!
( Sorry about my english)
/MTI

Type of myotonia: Unknown

Hello MTI:

I am surprised they did not take your concerns seriously, as there is a higher prevalence of MC in Sweden and other Scandinavian countries, than most of the world. Most doctors here in the US have never even heard of MC.

Do you have any idea what made your symptoms go away between the ages of 20 and 30?

Type of Myotonia: Becker

Country: USA

Hello Jenna and thanks for the reply!

The times i mentioned the stifness for the doctors weren´t many the latest year because the clumsiness had , in a peculiar way, become a part of me. I think many people with disorders of different kind can relate to.

When at some times I could tell a doctor ,they thought the stiffness only had to do with fear or anxiety. I was indeed bullied as a child, a lot of it had to do with my clumsiness),and other stressfull things upon that, has given me some problems with anxiety in some situations as an adult...You seldom disagree with doctors , and it´s true, everyone knows that the body-mind cooperate in many ways. Even tough it´s more usual with MC here in scandinavia it says in our healthguide over rare diseases, that ca 500 people are affected of MC in Sweden, so for an not trained neurologist it may be understandible to a certain degree that the symptoms easaly can be missed. (We are ca 9,5 million whole country)escpecially when you have mentioned that you have some issues with the nerves sometimes...

Why I felt better between the age 20something -30?..
hmm no clue really buth my guess is that I was smaller back then and maybe it has to do with my hormones. I have/had PCO.I think overall that my hormones play a significant role in my MC when i start to think abouth it.

Welcome! Pregnancy does make the myotonia much worse because of the higher levels of hormones. Even women who have very mild symptoms otherwise get quite stiff during pregnancy.

If you go to the main site ("Return to Website" link above) there is a good article about MC and some other information that might be helpful. Many of us were told we were clumsy or lazy when we were young!

Jan

Type of Myotonia: Thomsen's

Country: USA

Hi Jan and thanks for your reply. I think your site is very informativ and I´m very imressed of the knowledge you share

The pregnancy was indeed a wake up call