This Is MS Multiple Sclerosis Knowledge & Support Community

Are you on Cytoxan now? Are you taking any pharmaceuticals? Sounds like you have a great local neuro to keep treating you aggressively. When I went back to JH after Kerr left, they really did not want to prescribe any immunotherapy once I was diagnosed SPMS. My local doc recommended Betaseron but I...

Frank Unfortunately I'm still using a walker, but I feel great! I started blogging and here's my Cytoxan post: http://bit.ly/eluKEL What about you? How are you doing? Linda Hi Linda, My name is Steven. I answered you after Frank. I'm still progressing. I was just able to walk with braces at the tim...

Hey Frank~ I received treatment the Cytoxan July 2008. I got Diagnosed in Sept. 1996 and I was in a wheelchair by the time of treatment. I got back on the copaxone at Kerr's strong encouragement. He said that the majority of patients that didn't get back on Copaxone had symptoms, so I did. Do you h...

My optic nerves have also been normal. When I was 21, my vision became milky white, primarily in my left eye. I could still see but it was like a heavy fog. Pred Forte eye drops cleared it up each time and it really never seemed like a big deal as my vision remained mostly correctable to 20/20. Yes,...

Hey folks. Unfortunately for me, I wasn't diagnosed until I was years into the relapsing process at about the age of 32. I started experiencing retinitis at around the age of 21 that I'm told was the first episodes of the MS. The relapse that got me diagnosed left me with walking deficits as the dis...

My husband and I have actually heard the person in the video speak at an MS function and my husband, Mark, met him and spoke with him. He says that he was deteriorating quickly and decided to go into the study. He indicated that he was in bad shape and has gotten so much better that he is actually ...

The FES Bikes that some doctors at Johns Hopkins were pretty excited about, has anyone tried these things? I'm trying to get my insurance to cover one.

http://www.restorative-therapies.com/

Hey Sandy! I'm really sorry to read that you've had a similar outcome. I really am. But I am glad to read that you've had some improvements that lasted. How about Barb? She was also dealing with some progression when she was treated wasn't she? She is such a sweetheart. She loaned my sister in law h...

Dr. Kerr has left Hopkins but they have a Dr. Harrison who is devoting his time almost entirely to determining who has been helped by HiCy and who hasn't. I'm SPMS and was probably on the verge of it, if not right there when I was treated. I could walk short distances unaided at the time. But as muc...

Interesting! Thanks! I've wondered how many of us have done HiCy.

I received a letter telling me that my next three appointments have been rescheduled with a different doctor so I called and was told he's taking a job doing pure research. His assistant emailed me and told me that he's headed up to Boston. I wish him well. He's been such a great guy and I hope he c...

I got in last year very rapidly during the open label period that occured during the summer of 2008. I sent my records in May, saw Dr. Kerr and Brodsky in early June and was treated in early July. I remember they called right after my records arrived and said that I'd be receiving a letter letting m...

Thanks for the info Chris. I really appreciate it. Sorry for the delayed response.

Wow! Are you really making the trek from Alabama to Baltimore every three months?

I just completed my first year of every three month appointments. Are we supposed to follow up every three months for the second year as well?

Thanks,
Steve

Nice way to build a new immune system Keri!

I remember last time it took you a long time get this far.

Like Chris and you, I had bone pain on that drug. My back hurt severely for two or three days a few hours after each dose.