Hi Connie,

I just wanted to let you know that I totally feel for you when you say that you have to make yourself as sick as possible before seeing a neuro. I do exactly the same thing! As if being sick isn't bad enough, I feel like I have to make myself even worse. The only good side is that in my efforts to make myself sicker I've grown to know more about this disease I have. Unfortunately, most neuros just kind of dismiss the symptoms anyway, one by one. Still, I know now that squeezing my eye makes it droop as do hot showers, walking AND talking makes my breathing worse and will set me off sometimes for several days of fatigue, a couple of diaphragm exercises makes breathing worse, a couple of transverse abdominal muscles makes my stomach pop out to the point where I look 9 months pregnant and makes breathing harder, doing a few tricep exercises makes them weak and shaky and my arms will shake sometimes for the rest of the day, lying down when I'm really fatigued will make my oxygen saturation go down. And all that works unless it doesn't. Aaargh! This disease is so random!!!

I think Annie gave me this advice and I think it's really good: take as many pictures as you can. I still don't have a diagnosis, but I notice that docs seem to take me a little more seriously.

Anyway, I'm so sorry you have to go through this. Keep trying, keep trying, keep trying. That's what I tell myself, at any rate. I hope you find your answers soon!