I sympathise with you on this one. It's part of the curse of having a condition that is largely unknown even within the medical profession.

I think it helps if you can teach yourself about some of the technical aspects of Myotonia, Jan and Lois have been great teachers in that respect. I know some doctors can be resistent to the idea of an informed patient but when it comes down to it it's you who is suffering not them.

Type of Myotonia: Becker's

Country: England

Thanks for the kind words, Pete.
I like to print out documented materials, and I would also suggest printing out the letter on the MC website (you can access it via the link at the top of the page), and give them to the physicians I see - all of them! I have noticed that many doctors aren't really interested in MC, because it isn't "glamorous" in a medical treatment way. It seems to me that many neurologists say they know all about it, but then display cavalier ignorance - and don't care, because it isn't Parkinson's or MS. I am in no way minimizing those or other progressive and terminal diseases, but I am bothered by the dismissive attitude. So I try to be an agent for education - even if they never encounter another case of MC. And even if they resist or resent an informed and proactive patient - they have to respect them! Lois

Type of Myotonia: Myotonia Congenita, Becker's type

Country: USA

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