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Experience Project.
Posted: Wed Dec 05, 2007 1:57 pm Post subject: My Amazing Dr. Appointment
Just some background. Diagnosed Nov 06, sensory issues, on copaxone Nov 06 to May 07. Second MRI in May showed that some of my leisons had cleared, but just as many had appeared. Although I had no disability I had over 25 enhancing/active leisons, which was of concern to the Specialist, in an - its only a matter of time before something happens way. The Copaxone did something, but the disease was clearly pushing forward. I chose Tysabri as it was offered and I had not been on any of the interferon drugs and figured I could always go back.
I had my first infusion June 07 and had no reactions, but also was not able to see any change in my conditions, other than that the sensory issues that had subsided in April had not returned. I had my 3rd MRI on 11/19, and my Drs appt on December 3rd, and the Dr said she was amazed. Not only do I not have any new leisons, but I have NO enhancing/active leisons. Also my leison count has dropped significantly.
I have read in many places that there is not necessarily a correlation between the number of leisons on an MRI and disability, and have to agree as if there was always a link I probably would have been significantly disabled. In another post by Msladyinca (Lauren), she said her Dr was happy because there wasn't any disease progression, and that is what Tysabri claims.... I have to believe it is working for me, because thus far my disease progression has been illustrated by a leision infested MRI - until NOW.
I was hoping the MRI would look the same as May - as not to be disappointed, and I am now speechless.
Joined: May 21, 2004 Posts: 71 Location: Louisiana, USA
Posted: Sat Dec 08, 2007 4:13 pm Post subject:
That sounds great. I am going this week to get my first MRI since starting Tysabri in July. I was not expecting improvement in existing symptoms some of which I've had for 5 years. I am now able to curl my toes and walk freely. My EDSS has gone from a 5 to a 2 doing self-evaluation. I keep my expectations low and do not expect this improvement to be permanent. In the meantime, I am enjoying every day.
Joined: May 21, 2004 Posts: 71 Location: Louisiana, USA
Posted: Wed Feb 20, 2008 7:30 pm Post subject:
My MRI actually showed a few lesions on the spine. I do not have noticeable symptoms because of it. In the meantime, I climbed to the top of the Swiss Family Robinson tree at Disney World and had a great time there. A year and a half ago, I was contemplating shopping for a wheelchair. Eight months ago (one month before Tysabri), I had no control of my left arm and had double vision a few months before that. I know this isn't the case for everyone on Tysabri. Keep your expectations low and be grateful for any benefits you receive.
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