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From Germany [Myotonia Congenita Thomsen]

Hi!

I'm 16 years old and I am living in Germany. I am "suffering" from MCT since I can think :/. I have posted my "story" and my questions in a German forum already, but there are no answers yet. Are there maybe some german-speaking people here? I posted here: http://www.med1.de/Forum/Neurologie/2654/ (It is the last one). I'll maybe post the german Post here in English, if I have time ... my English is not the best ;)

Besides, do you know some other english or german forums about MCT?

Type of Myotonia: 172559690

Re: From Germany [Myotonia Congenita Thomsen]

Willkommen!

My German is awful, but I did understand some of your post on the German forum.

One of the top myotonia congenita specialists in the world is in Ulm. It would be a bit of a drive for you, but well worth it to see him. Here's the contact information:

The Department of Applied Physiology,
Ulm University.

Frank Lehmann-Horn, MD, PhD
Albert-Einstein-Allee 11
D-89081 Ulm,Germany

Phone: 731-50-23250 Fax: 731-50-23260

E-mail Dr. Lehmann-Horn:
frank.lehmann-horn@medizin.uni-ulm.de

What you describe with the eyes getting stiff is pretty common in Thomsen's MC. I used to be afraid to drive during allergy season because every time I would sneeze it would take several seconds before I could open my eyes again!

I have also had severe fatigue all my life. I would come straight home from school and sleep for an hour or two before I could do anything else.

I am glad you're staying involved in a sport even if it is difficult. I was able to get the myotonia under control with my diet. Mexitil is the most popular drug prescribed for MC but it doesn't work for everyone.

Please give Dr. Lehmann-Horn's office a call and let me know if they were able to help you. They may be able to put you in touch with others in Germany with MC.

Jan

Re: Re: From Germany [Myotonia Congenita Thomsen]

Hi!

Big thx for the contact information! I'm going to call there today. We also have the "Deutsche Klinik für Diagnostik" in Wiesbaden. I think, I'll try to get a date there. They have some good neurologists specialized to muscle desease there. Thats easier for me, Ulm is still about 300 or 400 kilometres away from Wiesbaden.

Do you have any experience with Mexitil or other medicaments?

Type of Myotonia: 172559690

Re: Re: Re: From Germany [Myotonia Congenita Thomsen]

Hi

I got a date at the "Deutsch Klinink für Diagnostik" in about one Month. I am going to some have muscel ecg's and magnetic resonance imaging (maybe the wrong expression^^) etc, just everything oO. I have to be there for three days, so I guess (at least I hope), I'll get a good treatment and a good medicine .... the tiredness really sucks these days, when the summer comes :/

I'm also going to call Prof. Dr. F. Lehmann-Horn for some more information.

Lash

Type of Myotonia: 172559690

Re: From Germany [Myotonia Congenita Thomsen]

I'm glad you got in to the clinic. After three days of testing you should have a very good idea what your condition is and how to treat it!

Please let us know what you find out and what type of treatment is recommended.

Jan