September 28, 2009 at 11:31 pm

I was just wondering what gains Ryan has made on the prednisone, as well as the PE. I believe that for someone that age, a good result should be almost back to the way he was. That is what I would want for any 20 year old. When Emily had her cytoxan treatments she was fully paralyzed & had been that way for almost a year, or at least deteriorating for that long. How wonderful to hear from her now, back in college full-time & hiking 8 miles. I know you have an excellent neuro for Ryan, so he will do his best, but I want Ryan to have what Emily has, my heart breaks so much for these young ones on this forum…

I am just curious about the insurance issues, as IVIG was costly back in 2002 as was PE. My insurance was thrilled to get by on $800 a month after 3 months of paying for weekly IVIG, PE & solumedrol. I kid you not, for 12 weeks every Friday I began my day with PE, & then rushed home for IVIG & solumedrol. My treatments were costing my insurance company over $40,000 per month. I am also curious about the side effects of cytoxan, as I never had any. But I have said enough, ultimately everyone must pick their protocol based on what they believe is right for them, age might also factor in.

I hope I have offended no one, but until this subject came up, I have been silent for quite awhile. If I were one who got monthly IVIG & was essentially “normal” strengthwise & feelingwise, I might not want to rock the boat. But there are many out there who are not that lucky, & it is nice to hear there are alternatives to IVIG & PE. Good luck to all with this awful illness, & may everone find their own “magic bullet.”


July 20, 2009 at 11:18 am

Be sure and take all of Ryans previous blood work, etc. so that Dr. Lewis can look at it all at a glance. I carry all the stuff in a three ring binder. When the doctor mumbles something I whip it out so that we do not have to do things twice or so that they can look at the results of the same test over time. Dr. Lewis has been known to diagnose people with things different than what they think they have. Lets hope that is the case with Ryan and he can be treated easily. I think about Ryan a lot. He is at the beginning of his life and wants to live a normal life like his friends. Isn’t it strange that we got the luck of the draw or whatever? God is still in the healing business.