Originally Posted by CowgirlUp

Thanks so much to all of you who have replied. I have already learned things from your posts that I didn't know before! Finally! Some people who know what I'm going through . . .

I really appreciate your warmth and willingness to share your information with me. That means a lot. I will check into some of the things you've told me. You've made me feel somewhat better about the Rituxan. I have not had any problems with the Cellcept. It just hasn't worked well. And yes, I do have bulbar symptoms and don't really have much in the way of ocular sx as one of you mentioned. I do have weakness in my arms and legs as well. I especially have problems with breathing but have fortunately never gone into full crisis. I used to choke a lot as well, but both my breathing and choking have gotten better to some extent since my surgery. But I'm just finding it really difficult to work some days. My sx are so variable from day to day and it's really frustrating. Especially since no one has ever heard of what I have or gets it.

I have not tried Imuran or steroids. Imuran has not been given as an option yet, and I have other problems that the steroids would likely exacerbate so I'm not willing to try them yet--I'm also relatively young (47) which is another reason I don't want to have to take steroids--I can only imagine what decades of them would do to my body!

I have had some problems with the p.p.--three times I've gone into life threatening citrate toxicity, but I think we've solved that problem pretty well. It's been the only thing that has helped. I used to walk with a cane and had so much trouble breathing and now I can walk relatively well.

Again, thanks so much to all of you. Your kindness and experiences have made me more hopeful. If I can help any of you, please do feel free to contact me.

MK