Unfortunately I think this sort of 'goes with the territory'. I saw lots (& I mean lots) of doctors when I was young and it wasnt until I was 11 that a specialist in London actually managed to diagnose this condition. I dont blame anyone, esp. the doctors as it is pretty rare (in fact I like to think of us as fairly 'unique'). Even now I think that the doctors I have seen dont really have much of a clue about the issues we face. All I can add is 'chin up' as we Brits say..

Kev

Country: UK

Thanks for the comments. As an RN, I feel that articles should be written addressing the problem of physicians' lack of concern when it comes to listening to their patients and the poor documentation that occurs when you do state something. (either it is misquoted or totally absent from the notes) On a positive note, I have found a wonderful neurologist for my child who DOES listen! Hope all who read this are doing well.

Type of Myotonia: unkown

Country: USA

Jodi - I couldn't agree more - - - People really need to be vocal about their experiences with physicians. For way too long, folks have been intimidated, thinking that doctors were sacrosanct, and didn't realize that they had the right to send letters to their medical groups, insurance companies, state medical boards, hospital ombudsmen, and other groups that review and do oversight and quality management of the doctors who practice under their jurisdiction. Feedback about doctors who don't listen well, who omit or alter information, who marginalize or dismiss complaints, etc., really CAN help in counseling doctors and improving overall care and patient satisfaction. And the source can be kept strictly confidential. Lois

Type of Myotonia: Myotonia Congenita, Becker's type

Country: USA