Originally Posted by
annekat
I agree! My doc in 2011, year of dx, was crappy in more ways than one, a pulmonologist with little WG experience, and I don't know that anyone else in town would have been better. Though he was a good enough doc to figure out what my treatment should be.... at the time, Cytoxan and pred, and Bactrim. I found this forum right away, even before official dx, so was already familiar with the treatment I was getting and knew it was right! (Rituxan was on the cusp of being approved). Though I was shy at first and lurked for awhile, I got so much comfort and knowledge from this place even in the early days of treatment. My ENT who dx'ed me told me I'd had it for 2.5 years; he hadn't caught it and was treating me for other things. He apologized. I think by then I already knew from the Forum that it was a familiar scenario resulting in many delayed diagnoses. There was so much to learn and I felt lousy but when I wasn't eating or sleeping, I was right here with you all. I really don't know what I would have done without it. I think in many ways you saved my life, both emotionally and physically, as you gave me a basic working knowledge, without which nothing the doc said, which wasn't much, would have made sense or been helpful. So once again, thank you Andrew and everyone else from the bottom of my heart! And I will look at the trial version very soon, I'm just too tired tonight.