Hey Rach,

Don't feel bad about what you said. Personally, I think it's a natural response to say that life isn't worth living at times when life for us can be very, very difficult. They say that it's all the little mundane things that make life beautiful - a walk in the forest, a trip with the kids to the farmer's market, a giggle with a close friend over coffee. And a good portion of the time we're denied all those wonderful moments. We're stuck in bed or on the couch staring at the same four walls with the same tape running through our heads: why doesn't anybody believe me, what will happen to me, how will I make a living, this isn't what was supposed to happen, when will this end.

It takes enormous courage to get through what you are going through. It's awful enough having a chronic disease that is diagnosed and treated. Being in the bubble screaming with nobody listening is it's own kind of hell. Really, somebody needs to write a book, start an organization, start a forum for people like us who are just trying to find a diagnosis and need some kind of road map.

But you're still fighting the good fight and that's a wonderful sign. Think of all the people who must have given up who nobody hears from. Ouch. But you're in there, you're still seeking answers, standing up and saying what you need to say to your doctors. I think taking a video of your symptoms was genius! You know we have all these new ways of making ourselves heard and believed and understood - videos, the internet, printing out photo sheets. It takes some creativity to see how to use these tools and you're doing it. You're working it, baby!

Just keep telling yourself that you know you are sick. Period. Nobody knows how you feel except you and it's the height of absurdity, in my opinion for one human being to tell another that they know better how the other feels. Not possible! And we'd have to be drooling idiots to mistake a mental problem for a physical problem. Geez! Give me a break. I have a degree in psychology and I can tell you all that crap about women imagining illness came from a time when doctors thought all women were hysterical. And then Freud did a lot of harm to women with that nonsense and it's still causing us harm. As another example, lots of women came to him with stories of sexual abuse and he decided that they were all nuts, hysterical nuts. Well, he was wrong. It cracks me up that these know-it-all neurologists are still carting out these victorian ideas. Ya, maybe you need to be chaperoned everywhere you go too. And put that corset back on. And education will ruin a girl (probably that's why you're nuts ). And don't even think about voting. Puh-lease.

By the way, I looked up the ice and tensilon tests in a book I have on mg and it just said that a resolution of the ptosis was considered positive. There was no mention anywhere of length of time. Maybe you can find some articles that talk about that.


Hang in there, Rach. You're going to be knocked down again. And probably again. Just keep getting up, that's the key.

Ally