Hi StephC

Hope you are having a good day. Those are great intentions

Internet

I think we all do our bit by writing here. I certainly know from personal experience that without the use of internet I would without any doubt not be having an upcoming referral for an SFEMG or been on a Mestinon trial. In fact it is very likely I would have continued to believe the doctor who insisted myasthenic muscle weakness was psychosomatic and the neurologist who said I needed to use my muscles a little more and everything would be just fine. Internet research has made me more daring to stand up for myself in the face of closed minded medical professionals. Do I think I will ever change their thinking? I´m certainly doing my bit and writing some kind but informative letters which probably won´t change any doctor´s dismissive attitude for the better - but at least I´ve actually done something.

MG Forums

Posting on forums is not my favorite way of communicating, nevertheless, every time anyone posts on an MG forum they are doing their little bit. I deliberately posted a while back about an unusual myasthenic reaction to sedatives, because I found no similar information on the internet (except with responses to antibiotics) and felt in a way it was my duty! Someone somewhere may be gathering valuable data from something on this or any other MG forum as we speak. Today´s medical students are younger – they know where to find the best information!

Media

Wasn´t it Sugarkiss who suggested a documentary? (it´s that kind of alternative thinking that is followed through that sometimes gets the biggest result – great idea Ms. Sugarkiss!) How about getting a Michael J Fox type figure on board? What about also including a broad focus on how this is so much a snowflake disease. Or a ´Myasthenic Mystery´ because it ´hides´ itself so cleverly.
At the moment, nothing is funny about having a serious disease but there are some comical elements which can lighten the information overload to the public and simultaneously but effortlessly draw in the docs and neuros to the cinemas!!! In fact on another forum a really nice man landed in the hospital with a breathing crisis, which is not funny, but the way he described how the doctors and nurses were flicking frantically through a manual to find out what they should do with a gasping myasthenic in the ER just by itself made me think of something for television. I do also know two people who are writing books about characters with other related diseases and the simple ideas behind them are really quite ingenious.

In my life at least, I´ve found that it´s exactly those times when you least think you are reaching someone that they have already changed precisely because of something you said or did that you thought was insignificant.