This Is MS Multiple Sclerosis Community: Knowledge & Support

_________________
Feel free to visit my Blog and leave me a comment, I'd love to hear from you!

http://lauren-livingwithms-aolcomlglbgl ... gspot.com/

Co-owner of a MS Support Group

Why are you concerned about the lot # and expiration date?

_________________
Feel free to visit my Blog and leave me a comment, I'd love to hear from you!

http://lauren-livingwithms-aolcomlglbgl ... gspot.com/

Co-owner of a MS Support Group

I was infused yesterday. Chronic Progressive MS since '84. As I was being infused my speech got better. By the afternoon my walking improved, no longer had to bounce off walls. Feeling starting to return in fingers. Pain in legs is less.
This for me, is not like a cold, masking symptoms, I feel better. Not that fatigued feeling. Workout improved.

I type this to let all know there is hope. Ty is not the cure, but it does work for me. This is not a placebo(sp) effect, but a diffrent feeling.

Pete

PS: I've been on CRAB's before.

_________________
Feel free to visit my Blog and leave me a comment, I'd love to hear from you!

http://lauren-livingwithms-aolcomlglbgl ... gspot.com/

Co-owner of a MS Support Group

If you and other's want, I will post improvements. I am taking today off and will try to sweat for the first time since '84 on the stairmaster. Can you tell how exited I am. Resigning myself to not ever improving, to this, is amazing.

Keep moving forward.

Pete

Hiya Pete!


You bet I do, please! I look forward to reading yours and anyone else's experiences with Tysabri...improvements or not! And don't overdo on the stairmaster dude! Slow and steady buildup over time, ok? Pleeease?



Yes it is, you need to now resign yourself to the fact you have HOPE again! woohoo!

Pete, may I ask a favor of you and anyone else receiving Tysabri infusions please? The next time you (or any of you reading this post) go for your Tysabri infusion, would you ask (when you first arrive there) that you be given the Lot /Vial # of the little Vial of Tysabri and the Expiration date showing on the Vial and send me the information at LGLBGL2003@AOL.COM with just your State, please? All patients are entitled to this info at each and every infusion.

Our website is calculating how many Tysabri patients are being infused monthly, and we can calculate this by the Lot/Vial # and Expiration dates.

If you, and the others can do this, it would be very much appreciated by not only me and our website, but I'm sure other patients are curious just how many are being infused with Tysabri and you'd be helping them too!

Thanks so much, and easy Pete, easy!

Lauren

_________________
Feel free to visit my Blog and leave me a comment, I'd love to hear from you!

http://lauren-livingwithms-aolcomlglbgl ... gspot.com/

Co-owner of a MS Support Group

Finished my workout. 12 min. on the stairs at level 3. Was able to finish and still not fatiqued. A week ago, no way does the stairs even happen. I feel different, not that tired feeling. Hard to explain.

Ty effects each of us differently. For me, this is just amazing.

I'll ask your question Lauren.

Pete

_________________
Feel free to visit my Blog and leave me a comment, I'd love to hear from you!

http://lauren-livingwithms-aolcomlglbgl ... gspot.com/

Co-owner of a MS Support Group

I am so happy to read that this is working for you all. You may or may not have seen the post in another thread about Gary's Tysabri experience. He had the brain MRI which showed NO scars, then they did the spine. NO scars. Now they think he has Neuromelytis Opitca or Devic's Disease instead of MS. We figured Gary was out of the running for Tysabri when they saw the MRIs, so he opted to get the blood test which will show NMO with 70% accuracy. He has waited so long for Tysabri, which has been given for some NMO, but does not look to be the best treatment. Rituxan will stop NMO and they can monitor his blood for the B cells and give him a booster of Rituxan when it comes back. Bad thing is, Rituxan is considered experimental. HERE WE GO AGAIN!!!!!!! But with it being an approved drug, just not for this, maybe we can get it. It has a real good abstract out on a small study of NMO. Gary had the blood test today, but it will be 5 days minimum for the results. Only Mayo clinic does this test. But I am so glad to FINALLY read some Tysabri results.

I noticed about 5 eastern that the pain, numbness(sp) in my legs is almost gone.

The people that made us wait for Ty had no idea what this drug means. If given a choice between the chance of death and staying the same as when this was removed from the shelves, I would have taken my chances. Signed whatever.

Somebody making choices for me. That's to full of oneself.(sp) Get a grip. I, we, don't need a big brother. It's my life, not your's!

G. Bush has some set, going against the house and senate to veto stem cells. Watch, that's where CURES are. If you don't agree, don't use them. Tell me how discarding them is diffrent from using them for research? Dead is dead. Go figure. Yes, I'm angry and venting. People have to suffer with diseases that could be helped. All for the sake of one man's belief. Now we wait for '08. Hopefully then, the NIH will gett the money they need.

I'm lucky, Ty work's for me.
Pete
http://thisisms.com/modules.php?name=Fo ... 9905#19905

I noticed about 5 eastern that the pain, numbness(sp) in my legs is almost gone.

The people that made us wait for Ty had no idea what this drug means. If given a choice between the chance of death and staying the same as when this was removed from the shelves, I would have taken my chances. Signed whatever.

Somebody making choices for me. That's to full of oneself.(sp) Get a grip. I, we, don't need a big brother. It's my life, not your's!

G. Bush has some set, going against the house and senate to veto stem cells. Watch, that's where CURES are. If you don't agree, don't use them. Tell me how discarding them is diffrent from using them for research? Dead is dead. Go figure. Yes, I'm angry and venting. People have to suffer with diseases that could be helped. All for the sake of one man's belief. Now we wait for '08. Hopefully then, the NIH will gett the money they need.

I'm lucky, Ty work's for me.
Pete
http://thisisms.com/modules.php?name=Fo ... 9905#19905

Amelia, that's .... ummm, email me your address dear or read the 'News" posted by Arron re: Rituxan and my response thereto, but happy he rec'd a different dx than MS? If he's happy, I'm happy for him. Any word from Ronnie, Amelia?

And Pete?

Yeeeowzas!

Could't agree with you more, dude!

All my best to both of you..,

Lauren

_________________
Feel free to visit my Blog and leave me a comment, I'd love to hear from you!

http://lauren-livingwithms-aolcomlglbgl ... gspot.com/

Co-owner of a MS Support Group

I cannot be the only person on this board with a good expierance with Ty. Fill us in, let us know the good or bad. Make it worthwhile visiting here. Hearing myself is boring.

Pete

I'll post here.

Just got back from my workout. Inceased to 8 min, on treadmill then 10 on bike. 1% elevation and 1.2 MPH then weights. I could not due any walking befored Ty. Treamill was out of the question. Now, feel tired, but not fatiqued. Out to lunch soon, then rest.

Pete