This is for all those reading who are struggling with diagnosis and the skepticism of other people in their lives (especially neurologists). They say MG is the best understood of the autoimmune diseases--well the understanding of the rest has to be pretty horrendous. Perhaps because they have a mechanism for MG they are blind to all the other mechanisms that may be at work--unknown autoantibodies, genetic predispositions, environmental toxins, infections, disruptions in some other phase of the complicated cascade that leads to muscle contraction. Because some people follow a relatively predictable course starting with the eyes and have the predictable autoantibodies, some neurologists think everyone with MG should do them the favor of presenting in that manner (is it our fault if we don't).

DON'T GIVE UP!

I had lunch today with two of my closest friends who asked me how I was feeling. I asked them back, "Do real people feel like this? I remember feeling like this when I was four." It is not an struggle to get up in the morning or roll over in bed or get out of a chair or walk up a few steps or eat at night or work at the things I love. I am not cured or even in complete remission but if it takes more effort today, there is a good chance it will take less tomorrow. MG has been interfering in my life for over 35 years--certainly not a common presentation--or how do we know if the problems are dismissed because the presentation is not "common." I can't get those years back and I might have died without anyone ever knowing (after all lots can happen before you reach 65). But I know now, and I hope there are years to enjoy knowing and being treated and I hope you are younger, you find someone sooner, you get treatment, and you start feeling as good as I do today! I think this is how real people feel, they just don't know to appreciate it as much as I do. b.