Hi again ...
My symptoms started when I was too young to remember - I know this because some of my earliest memories are from when I was 1.5 - 2 years old, and then a lot more from age 3 on - and I can't ever remember a time when I was not "afraid", self-conscious or nervous about falling over, tripping, etc. I have such clear memories of my Dad trying to dance with me standing on his feet, and me not being able to stay in place, even though he was holding me, because my legs and feet were so stiff and wobbly!

Since I was told I was clumsy, lazy, unmotivated, attention seeking, and a whole lot of other garbage, and that there was nothing wrong with me, eventually I gave up, and figured that I was just a grossly over-muscular, clumsy and lazy person, and bought into all their nonsense. Never had any sort of medication, and by the time I learned the truth, at age 54, I was not at all interested in trying drugs.

I have learned to live with this, and I'd rather not take medications that are intended for malaria, heart conditions, seizures and other conditions I don't have, just because they happen to potentially ease my symptoms - maybe and sometimes. For me, the techniques I self-learned over the years were sufficient to allow my life to be normal - although there are lots of things I would have liked to try, which I did not because I just knew, innately, that they were dangerous for me personally - like skiing and motorcycle riding.

I always craved exercise, even though beginning was tough, because of the stiffness. I pushed myself a lot - now I realize that I was sort of fighting with my internal self - and yes, afterwards I would be very sore, very stiff, and very weak - sometimes for more than a day! Now, I am slow, and much more careful than I used to be, because I have a couple of other things which diminish my mobility, and I need to be more deliberate in my activities. Bummer!

I do not do Jan's diet - over the years, I have been macrobiotic, strict vegetarian, junk food junkie, thoughtful natural foods mom... I can say from my own personal experience that I have never, ever been able to tolerate caffeine, and had no problem avoiding it, because it has such a dramatic effect on my muscles, head to toe. As far as sugar goes, it absolutely does make a difference in how I feel and how my body 'behaves', but I am weak and self-indulgent, and so I do eat things with sugar in them, and accept the suffering - until I have an "ah-ha' moment, and back off for a while. But I am addicted to chocolate, so I always end up giving in. I really have no other vices, so I feel sorry for myself! LOL!

As far as chemicals - my garden is organic, I use no insecticides or pesticides, I use household products that are as basic as I can find, and I eat fresh things, not canned, not packaged, etc. I am not a fanatic, and each person has to find the point at which they feel comfortable. For some, being absolute in their habits is necessary for every day functionality. For others, (especially the young kids) being able to party and do the things their friends do, and eat on the run, etc., is more important at this point in their lives, and they will ignore a lot, in order to fit in.

Then there are the rest of us, who fit somewhere in the middle, and learn which things set us off the worst, and eschew those, and do other things in moderation. Jan knows that some people can't even eat a banana without having real trouble with the amount of potassium in it. I can eat half a banana without feeling anything negative, so I do, maybe once a week. It's all trial and error with us - not nearly as scientific or precise as diabetes! lois

Type of Myotonia: MC- Becker's type

Country: USA

Julie - (My "baby" sister's name) -
Hi and welcome. First, I want to say that Jan is extraordinarily modest. Despite not being a doctor, or "officially" a researcher, Jan has done SO much research, so many interviews and follow-ups with people who have various myotonic conditions (and some who are mistakenly told they have myotonia, whom she has help look for more accurate diagnoses) - I personally feel that she is one of the most knowledgeable and capable resources in the world. This is not only because of her depth of understanding about the conditions, but also because of the breadth of networking and resourcing she has developed, so she is able to answer almost every question posed to her - or refer people to top experts, who won't poo-poo the questions presented to them. I'm an RN, and had never heard of MC when I was diagnosed a few years ago. Jan has been my most valued source of info and guidance. I have yet to find any physician who has even half her knowledge base on a number of subjects.

I didn't see if anyone had mentioned the effects of sugar, caffeine and chemicals (pesticides, cleaning chemicals, food preservatives, and such) on folks with MC. Try to take your daughter off foods with added sugars, soda or other things with caffeine in them, and be aware of the insecticides and preservatives used on foods - wash all fresh foods thoroughly. These things may make a difference in her stiffness.

Welcome to the forum - lois

Type of Myotonia: MC- Becker's type

Country: USA

hi nurse lois (my "baby" sister is also an RN) hehehe
thanks for the welcome and i am so glad i found this forum.. to get answers to questions that doctors that i have seen dont know how to answer... and to get to know people who have MC like us... a few years ago when i noticed that my daughter was not walking right i took her to a doctor... he said that she needed exercises and he gave mecrazy little exercises to do for her... this doctor pointed me in the direction of another doctor who told me that nothing is known about my daughter's condition... he also told me to get her to exercise more... but i saw no difference in her with the exercise.... with me.. when i exercise the stiffness gets worse.. so i was confused whenthe doc toldme to get her to exercise more.. and my husband was so frustratedwhen he saw that the exercise was not helping at all.... i explained to myhusband that it is the same with me.that exercise makes it worse sometimes and sometimes doesnt... but the stiffness is still the same or more... so we stopped allthe crappy exercise with her.. and took her to yet another doc.. the one that we are at now..... he told usthat not everything is known about MC but they are still working on it. and that there are meds that MAY help.... and they may not... he gavemy daughter acetazolimide 250mg... half a tablet morning and 1/2 at night... we were seeing a difference for the better inthe last 3 weeks but yesterday we had2 birthdays to go to and she had a little too much sugar... and today her stiffness was back... it was like she was not taking any medication..... i think it is the sugar that is affecting her.. i think i will take her off the sugar and sodas to see how thatwill go.... thanks forthe advice.. i seen the diet page and it looks so hard... i hate diets... but i think i have to try it to see if it really works or not.... areyou on this diet? if so seriously... what do you eat>? everything has sugar or potassium or preservatives or highers and lowers insulin levels.. so just curious as to what u eat....
ttyl

Type of Myotonia: THOMSEN'S

Country: LEBANON