Sara - You need another doctor - and you also need to know that you are legally entitled to copies of your labs, reports, test results and reports. In the case of something like Myotonia Congenita, it would be a really good idea to have a folder with all your consultations, evals, and diagnostic test reports and labs and DNA work-up, as well as some of the info on MC and anesthesia, malignant hyperthermia, etc... make copies of it all, and when you see a new doctor, take a packet along, and give it to the doctor to review. They are usually impressed - and then, often grateful, since they hate to admit how little they know! Lois

Type of Myotonia: Myotonia Congenita, Becker's type

Country: USA

wow. lois

Hi, I was wondering who is the friend in Singapore that perhaps I can talk to as Singapore is quite near to Penang

Charles, I think that showed up on my web statistics but not in the forum posts. Many people feel that their English is not good enough to participate in the forum so they just read the information.

I welcome their posts, even if they're run through a translation program and sound a little funny. It's great to connect with people all over the world.

Jan

Oops! I forgot about Jan's post, which adds 11 countries to the 19 I previously counted for, for a whopping total of 30. Here are all the countries:

Canada, Malaysia, England, South Africa, New Zealand, Italy, Sweden, India, Germany, Saudi Arabia, Chek Republic, Slovakia, Poland, France, Finland, US, Australia, Scotland, Istanbul

Ireland, Dominican Republic, Greece, Turkey, Austria,
Hungary, Singapore, Japan, Seychelles, Russian Federation, Netherlands

double wow! And to those people who feel insecure about their English - even if you have to use babelfish or another translation program, you should post and say hi, so we can greet and welcome you all! Lois

Oops again! I keep forgetting that Scotland and England are not sovereign states, but are two of the four countries that make up the UK, so if we subtract England and Scotland, but add the UK that gives us 29 countries instead of 30 countries.

On www.myotonia.de You can find a lot of people with MC from Germany and Europe.

Hello all. I just found this wonderful website. I was recently diagnosed (sept. 8), and I am from Texas. I am also going to partake in a study to test out a new medicine throuhg the University of Texas Southwest Medical Center. Although I can't remeber the name of the med. I will keep you guys posted. Again awesome website!!

Type of Myotonia: Thompsen's?

Country: USA

Welcome Casey. Hmmm... I have a cousin-in-law in Texas...

Type of Myotonia: Myotonia Congenita, Becker's type

Country: USA

My cousin and aunt just told me about this genetic issue in our family. They have had the DNA tests already. We are in Kansas.

Type of Myotonia: unknown

Country: USA- Kansas

Milwaukee, Wisconsin

Been a long time since I have been on this site. So you all will be seeing a lot more from me.

Have had a few interesting experiences to share since my last posts, just need to find the right threads for them, or start new ones if they don't exist.

Country: USA

You can add Wisconsin if you want.

Type of Myotonia: Thomsens

Country: US

You can add West Virginia to your list of states...

Type of Myotonia: unknown

Country: usa

what about lebanon??? that is where my family originated..... and where i live now...

Type of Myotonia: thomsen's

Country: Lebanon

you need to add south carolina to your list

Type of Myotonia: potassium aggarvated myotonia

Country: usa