Thank Ya Po!

I didn't get to comment on YOUR First infusion!
Glad to hear it was an uncomplicated day!
How did you feel when they started the infusion? Relief? Joy? Terror?
How are you feeling now??

I know for me, the whole process of fighting for Tysabri came down to when I signed the paperwork with the doctor. I heard a song on the radio out in the office- David Bowie~ "Grounds Control to Major Tom" I told the doc that the song said it perfectly...commencing countdown, engines ON!

A month later I heard the song again and it raised every hair on my body when the nurse turned on the pump and I watched that first drop. It had been 26 months of waiting and fighting. I had tears in my eyes and the nurse was blown away when I told her about what had happened during the previous 26 months.

I still think of those moments at the start of every infusion!

and yes...boring is VERY GOOD!

"...Take your protein pill and put your helmet on.." LOVE that song..
I spent some time calming my mind before I went. I wasn't nervous, wasn't even a spaz (), just curious..Watched them hook me up and the med dripping into the tube..Thinking how ridiculous it is to make someone jump thru so many hoops and wait so long for such a simple thing. Mostly, I was relieved that I didn't need any Benadryl..
I felt remarkably good the first couple of days. Now, I'm pretty much back to my old, old feeling self. Oh well, at least I know I have something to look forward to!

Weegot- I am dxed ms sever 2-16-08. My desion to go on Ty was made in less then 5 min. I am not afraid of the so called risks. It is my understanding many died when other drugs were 1st brought on also. But this has nothing to do w/my desion. I do not wish to be in a chair ....I refususe to live like that or worse. My choice! I want the most agressive possible.

Bottom line is it it a personal choice as River said. I here u're words & u seem to be willing to take more from this disese then I am. We are all different! All I can can say is search u're heart. I also do not think the risk of a problem r high at all. Ty is just the newest drug so there r minor risks IMO.


I wish u the very best

BTW all - my cog is bad & forget typing - sp... I do not see a ck on here but prob is. So sorry 4 mistakes - I just give up on that - least of my probs - hope u understand.

Hi Frank,

I thought a long time before choosing Tysabri. Now I'm glad I did. I feel much better than I did on any of the shots, and so far my symptoms have let up, I have more energy and more strength too. No more shots either which is just a nice convenience.

From what I recall, you have a good neuro too so I'm sure he'll keep a close watch on you for any signs of PML.

If you decide to take Tysabri I hope you'll get good results.

I had my 2nd infusion yesterday. I feel the same. Don't get me wrong, I wasn't expecting a miracle, but I guess I was hoping. I don't feel worse, so I know that's all I can ask for. How long did it take for people to feel better? I've heard a lot of 3 or 5-7. Is this accurate?

Hi Stacer,

It was almost a year for me before I knew for sure I was feeling better. I actually felt a lot more tired much of the time for the first several months. It's been a very gradual change for me though.

Hi Stacer,

It took a few months before I thought I was seeing results. I was afraid to post about them until I had clinical proof.

My 6 month MRI confirmed no new lesions, no enhancing lesions and some large lesions smaller or gone.

My vision test showed no damage, vision back to pre-diagnosis levels, I had control of my eye again! ( previous to Tysabri I had dizziness, balance issues, double vision, and an eye that did what it wanted to when it wanted to.)

My fatigue was down to half of what it was .I went from 400 mg a day of Provigil to 200 or less.

Spasticity cut by 2/3rds. Went from 80 mg+ of Baclofen to 20-40 mg a day. Tizanidine cut to 4 mg at night from 8 mg.

Cognitively, I wasn't as tired, so my thinking was more clear. I could balance my checkbook again, read a newspaper or a book and actually get through a page without having to go back.

Best of all, I haven't had a relapse since I started Tysabri after going through one every three months or so before Tysabri.

It took a while, and the change was subtle, but there was improvement!

I'm still stiff, and I still have spasticity and fatigue, but it's nowhere near as bad as it was and I don't feel as if I have progressed any further. Each successive MRI has shown improvement.

Tysabri is designed to slow progression and reduce the number of relapses and in my case, that has happened. The rest is the gravy, the whipped cream on the pie, the cherry on the sundae!!

Thanks for your replies! I guess I'm looking for the gravy, the whipped cream on the pie, the cherry on the sundae. I'm trying to be patient. Like you all said, I'm just hoping to slow this progression. I'll keep you posted! Thanks again.

Hi Stacer, I found the gravy, whipped cream, cherry (whatever you'd like to call it) in 3-5 mths. I started noticing I wasn't leaning so much on the shower wall with my elbow (balance), that I could now do dishes (husband likes this)' could socialize longer and more and no longer dozing off in front of the tv Now all of these have held-even more so of each- I've had 33 infusions. A few months ago I noticed that the jumping of my right eye (nystamygus) -sp- is now not happening after first having the issue for a few years and my bladder may be a bit better.
Ty has also done for me what it claims to do
Best wishes,
Linda