Aww . . . you guys are so sweet to be worried about me! I'm still here . . . so here's an update.

My second appeal regarding the Rituxan was denied. As Alice says, it's still considered experimental, although there's good results for refactory MG, which is what the neurologist says I have. It's frustrating because other companies are paying for it, and as my neurologist noted, pretty much every treatment for MG is off label and may be considered experimental. My neuro is pretty unhappy that they won't pay for it even though he sent them all kinds of research regarding it's effects on MG.

I did have an EMG last week, and then a single fiber test as well. Both were done on my left arm and both were normal, which neither of us were surprised by since it was normal before. Now we have set up to do a single fiber test on my intercostal muscles and maybe my diaphragm as well. We haven't done that before. So NOT looking forward to this as these tests are painful, and I feel like I'm only doing this to try to prove something to the insurance company--it's not going to really help me in any way since they do seem dead set against ever paying for the Rituxan even if I prove I have MG through some kind of test. I feel like I have to go through these painful tests, lose time from work, etc. really for nothing in the end. I asked both the neurologist and the pharesis doc again if they still think I have MG even though my tests are normal and they both said absolutely and that there is nothing else that would account for my symptoms. What the hell does the insurance want?? Yes, a positive test would prove I have MG, but a negative test doesn't prove I don't. It's such a waste of everyone's time and energy, especially mine. My neuro said he's going to write another letter to the company detailing all of the evidence for MG in my case and that he doesn't think they will try to deny me any other treatments. He said they were questioning the dx, but they weren't reviewing my whole case or asking for another opinion or anything like that, so I guess that's good. I think now he's seeing it as a challenge and that's making him do more. I'm just very frustrated with the whole thing, and disappointed about treatment. The neuro says there is yet another med I can try, but he's not that hopeful that it will work any better than the Cellcept does. But I told him I was willing to try whatever we could because I really need to not have so many sx if that's at all possible.

So that's my MG update. I won't bore you with my work nightmare and other crap that's also going on. Suffice it to say that I'm quite stressed and wish I could just quit everything and just sit for about a month. Too bad that's not going to happen.

Thanks so much for caring about me enough to wonder how I'm doing and to actually take the time to post. That really means a lot to me! I wish I had better news. I'll let you know if anything happy happens. I do hope that all of you are doing well.

MK