This Is MS Multiple Sclerosis Community: Knowledge & Support

I had my third Tysabri infusion on Jan. 12 and I want to share the little things I've been noticing:
Once in a while, I take a few "normal" steps.
The numbness in my left hand comes and goes, but has nearly gone away.
I am not so tired.
The ringing in my right ear has lessened and has even gone away for a few seconds at a time.
Sometimes I can freely move my right leg.
I've even gone outside a few times!
My attitude is even more positive.
Noreen

thanks for the update Noreen. It sounds like people are having a mixed bag of luck with Tysabri but I'm glad you are noticing some (positive) differences.

Take care,
Lew

Lew,
My hope is that this is not wishful thinking. Basically, I am wondering if others on Tysabri are experiencing little changes like these.
Noreen

Noreen... I have had 2 treatments so far, and I'll be having my 3rd one next week. I have noticed subtle changes as well. I definitely have more energy now than I did before, and my numbness has changed. Now instead of the constant numbness, I am noticing that the feeling breaks through the numb and I actually feel heat coming through! Does that make any sense???? I know this illness seldom makes sense so I figured it's normal in the scope of things!!! I am glad you are having positive results!

it totally makes sense. the changes are very subtle, but i think when you have an illness like ms, you notice every change, no matter how slight. i, too, feel a change in the numbness, but of course it is different for me. i feel these little electric-like charges, like the synapses are trying to make contact or somehow poke through. i feel these charges in my fingers and toes. plus, the overall numbness seems to be lessening. and as i mentioned before, my walking has improved. does any of this sound familiar to you?

Lots of hits on this thread, but no one is posting. I'd really like to hear about your experiences with Tysabri. It helps all of us.
Noreen

Hi--

Haven't posted for a long time, but I'll have my first Ty infusion on February 5th at 2:00 pm. Quite nervous. Fingers crossed, praying to all possible deities...

Glad this forum is here. I'll post my experiences soon.

Good luck Oregonmom. My fingers are crossed for you, too.
Noreen

I didn't notice any change after the first 2, but I had #3 four days ago and suddenly I feel 100% better. Noticably improved leg and back strength. I have used forearm crutches for a year, even in the house. Today I vacuumed and am staggering around the house without the crutches. I am so happy.

Oh lucky you!
All these improvements make me looking forward to join the TysHappy team.

Okay! My first infusion went well.

Yesterday after my infusion I felt better than I'd felt in nearly two years. Y'all know that horrible fatigue...? The fatigue where you feel like someone is holding your head underwater and only letting you up to breathe half as often as everyone else...? It was GONE. Nuked. I was impressed. That boot-on-my-neck fatigue has been a constant companion since June of 2005.

But... my fatigue returned somewhat this morning. So maybe what I felt was the placebo effect. Still, it seemed like more than just that.

And I do feel good today, just a bit disappointed that I don't feel as superpowerful as yesterday.

I will keep everyone updated for infusion #2, which I'm not NEARLY as nervous about.

I keep reading about these small improvements. This is awesome! Improvements were not discussed at all when the FDA was deciding wheather to bring it back or not. Keep it up.

Pete

I am also heartened by hearing about all these improvements. My doctor, who worked on the Tyabri studies at Georgetown, was very, very upbeat about this drug and could not wait to get me on it. I am gearing up for my fourth infusion Feb. 13 and am more enthused each time. I do have a question, I have gained about 15 pounds over the last year, due to immobility. And boy, do I ever feel it! I have been reading about this Exn'Flex device which is a passive/active based therapy for the legs and arms. (It is a small unit with pedals) It's quite expensive, and I'd love to hear if anyone has ever used it, and if so, is it worth it. Thanks.
Noreen

Noreen, I use this machine which sits in my livingroom. I am not terribly impressed with it. I don't think it is worth the cost, although I don't know of a good alternative.

Hi Noreen
instead of buying expensive that'll finish at the back your garage, just go to your local swimming pool.
for my own experience, it has a double good effect:
-it is anty inflamamtory when the pool is not too hot(under 23°C )
-it produces much natural (unlive ldn) endorphins that makes you feel happy.
and also it's good for your shape.
FFF