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Old 04-10-2009, 12:45 PM #1
Grammie 2 3 Grammie 2 3 is offline
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Originally Posted by smurf View Post
hello i am not to sure how this works but here gos i was told in november i have ms i have started the tysabri infussions just hopeing to talk to some one that has them as well
Hi smurf, I've had 32 infusions Tysabri has, what appears to me, halted progression, given me better balance, less fatigue and more stamina. All this adds up to a better QOL
I've not had side effects. I am very grateful to this med !!!
Linda
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ewizabeth (04-10-2009), Natalie8 (04-14-2009), Riverwild (04-10-2009)
Old 04-10-2009, 06:01 PM #2
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Hi Smurf and welcome to NeuroTalk and to Tysabri!

I've had 24 infusions and feel like I've had excellent benefits from Tysabri.

No relapses since I started, vision is back to pre-diagnosis level, no balance problems anymore, cognitive stuff is good now, and MRIs are fantastic!

How many infusions have you had? Did it go smoothly for you?

Jump right in, someone will always answer your questions and there's lots of us here to talk to!
__________________
I know the sound the river makes, by dawn, by night, by day. But can it stay me through tomorrows that find me far away?


.
I have this mental picture in my mind of you all, shaking bones and bells and charms, muttering prayers and voodoo curses, dancing around in a circle of salt, with leetle glasses and tiny bottles of cheer in the middle...myyyyyy friends!

diagnosed 09/03/2004
scheduled to start Tysabri 03/05
Tysabri withdrawn from market 02/28/05
Copaxone 05/05-12/06
Tysabri returned to market 06/05/06
Found a new neuro 04/07
Tysabri 05/25/07-present
Medical Marijuana legally 12/03/09
.

Negative for JC virus antibodies!
.

I'm doing alright and making good grades,
The future's so bright, I gotta wear shades!
.
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Old 04-12-2009, 02:04 AM #3
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Hi All - Hi River, glad to hear u r still doing good. I'm really down so do not come on much. Typing prob too. #13 last mo coming up on #14 this week. Still in relapse. Had to have 4 iv roids in Feb. They were hel@ 4 me but worth it. I was much worse b4 them. Slowly got better but still can not get out of this attack. Can't do much - maybe the depression too. But not why i came on.

I do have the best neuro in SE & he is published world wide. U know the name but w/not state here. New info on ty per mine.. 4 get the 15 day wait between roids & ty. Some Drs r now doing both the same day. Mine is holding bk to a 3-5 day wait. Then only in extrema but now safe - many do not know & not pub yet. Bio is being careful u know. Mine too but was one u known who helped get ty bk on last. Also, many trials with him including the 1X a mo pill. So, he is all MS. Still nothing they can do 4 me more.

Just wanted to update u on the new ty info I have - since I do not think public.

Wish u & All the best
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Old 04-13-2009, 08:01 AM #4
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Glad you checked in Sheena!
I've been wondering how you were doing.

I'm sorry to hear you are still in relapse, it sounds like you just cannot catch a break! It must be very discouraging for you!

I hope it gets better for you soon.

Steroid treatment for relapses has always been ok when on Tysabri. You just can't have pulse steroids (repeated monthly doses)
I'm happy that I haven't needed them since I started, but it's nice to know they are available if needed!

Let us know how you are doing!
__________________
I know the sound the river makes, by dawn, by night, by day. But can it stay me through tomorrows that find me far away?


.
I have this mental picture in my mind of you all, shaking bones and bells and charms, muttering prayers and voodoo curses, dancing around in a circle of salt, with leetle glasses and tiny bottles of cheer in the middle...myyyyyy friends!

diagnosed 09/03/2004
scheduled to start Tysabri 03/05
Tysabri withdrawn from market 02/28/05
Copaxone 05/05-12/06
Tysabri returned to market 06/05/06
Found a new neuro 04/07
Tysabri 05/25/07-present
Medical Marijuana legally 12/03/09
.

Negative for JC virus antibodies!
.

I'm doing alright and making good grades,
The future's so bright, I gotta wear shades!
.
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4boysmom (04-13-2009), ewizabeth (04-13-2009), Natalie8 (04-14-2009)
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