chrishasms wrote:So how is it so far for you Steve? BTW you are not the Steve I met at JH in March of 08 are you?
Hey Chris. I like your web site by the way! I guess you could call me stable. I had a great three month appt. with improvements in all categories but didn't do as well on the walking at seven months (had to miss a month because of weather in B-more). That had to be a different Steve. I was there in July.
But Dr. Kerr mentioned that any remylenation could be at least year out. I also remember reading an article in the B-more Sun that mentioned the greatest success stories such as Richard Bauer and one guy who had to be hospitalized at 10 because he was doing to badly, but a couple of years later, he was traveling with his wife. So it sounds as though low spots might be the norm for the first year or so.
Additionally, I really believe that I was one of the most disabled people treated. I wear dual afos and have some issues with my arms as well. But a lot of that was relatively new so I think the guys at Hopkins were willing to take chance on me. My MS hit hard, and mostly in the spine, but for the first year after diagnosis, I was relatively stable, walking unaided, no braces and doing my own grocery shopping while doing Betasron. I switched doctors and to Tysabri and for eight months, I tried to set a progression world record. After I finally argued my way off of Tysabri, I switched to pulse Cytoxan and ended up at Hopkins in July of last year, a few months after my former doctor in Raleigh had someone tell me over the phone that "there are no other options."
Oh, DRStines727, you asked about Copaxone. I started it in August of last year, about a month after the treatment. Also, I'd love to know the specifics of where you were treated? Were you hospitalized at Wake Med or Duke? Did you go back everyday for follow up care?