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