NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Multiple Sclerosis (https://www.neurotalk.org/multiple-sclerosis/)

- - Tysabri Talk (https://www.neurotalk.org/multiple-sclerosis/4402-tysabri-talk.html)

I would like it on record, that I never ever questioned Lauren on her choice of DMD, only her "facts" posts.

I am so happy that Tysabri seems to be helping Lauren and for all of you, it is helping. That has always been my wish for you in spite of all the misinfo, about Tysabri that has floated around out there.

Some may say that Tysabri advocates such as Lauren, take the opposite approach and want only the PRO news to be known and none of the Cons. :confused:

Thank you for posting, Lauren and I hope you will continue to do so and to enjoy all the great features of Neurotalk. :hug:

Quote:

Originally Posted by msladyinca (Post 236963)

Hi CJohnson,

Thank you so much for your comment...I don't post here very often as I never really received a very warm welcome nor much support with my Tysabri infusions as I was one of the first MS patients back on Tysabri therapy in 2006. Furthermore, much misinformation about Tysabri is posted on this site. Perhaps you will receive a better and more supportive reception here than I ever did.

I actually post on many other MS sites elsewhere on the web, where I am supported in my choice of therapy, and I support others with their choice of therapy. I am also co-owner of a MS Support Group on a different site. Don't get me wrong though, there are a few members here that are very nice and supportive.

In answer to your question, Tysabri has kept my MS stable and I have not had a relapse nor any disease progression in over 17 months. I am scheduled for my 19th Tysabri infusion next week, and I am looking forward to it very much. (Wooohooo!) I don't have any side effects whatsoever from Tysabri, and I love the convenience of an infusion once every 28 days.

Tysabri's superior efficacy of 67% in preventing further relapses, their accumulating disabilities, and slowing the disease process down far outweighs the efficacy of Copaxone which is 29%, plus you have to inject yourself daily with Copaxone and it takes approximately 6 months to a year for Copaxone to start working in the body, that's if it does work for you. To be fair, Copaxone does work great for some people. It didn't work for me though, nor did Avonex (which is an interferon [beta-1a], much like Betaseron is [beta-1b]).

Tysabri started working for me approximately 2 weeks after my very first infusion, and gives me hope for improvements each time I have been infusion.

Please feel free to visit my blog, which is also my Tysabri Diary... also, please feel free to contact me directly if you would like further Tysabri information which is accurate.

I support you in whichever medication you choose to fight your MS. Good luck to you, and all my best...

Lauren :)

Hi Lauren,

If I'm not mistaken, you're from that "other" MS board??!! Welcome to NT.

Did I read this right? Have you had 19 infusions??? Glad to hear things are going well for you.

...19th Tysabri infusion report

Thank you everyone. I just finished my 19th Tysabri infusion and everything went fine. Even had my blood drawn afterwards to check my liver function enzymes which I have done every six months pursuant to my neurologist's instructions. I even have a six-month follow-up appointment with my neurologist tomorrow.

One of the infusion nurses at my infusion site mentioned to me that her sister is being tested for MS, and so far, it's looking like she's going to receive a confirmed diagnosis of MS very soon. She asked me many questions about Tysabri, and I gave her whatever information I had, as well as my opinions about Tysabri, and suggested that her sister discuss Tysabri with her neurologist.

It is dinnertime here, and I'm getting ready to have my regular treats: pizza and mudslides, then I'm off to bed after I do my physical therapy exercises. Life is good...,

Hope everyone is well, and stays well.

All my best, Lauren

PS: Victoria, I post on many different MS sites/forums, not just one other.

Quote:

Originally Posted by msladyinca (Post 240488)

Hi Lauren!

Glad to hear # 19 went just fine! Have a mudslide on me and come on up to the Tysabri thread here under stickies and add your information!:) People need to hear it all!

Nancy

Hi Lauren, I'm so glad everything went well for you today. I knew it would! Mine went great yest with really no sides to speak of. Having a few problems, but thank God they started before the infusion so noone can blame TY. I love this drug. Thank You for everything ~Sheena~:hug:

Woowzaaaa!!!!!

I just read all of this Old Tysabri Stuff - Whatever works let's rejoice:D

I just had #19 yesterday and cannot say enough Good Stuff about Tysabri For Me and my MeSs - Again - For Me!!!!!

It has brought to me a New Life - A long time ago I had 1 infusion Feb 15 05 & I think it was the next day it was pulled from the market. At that point I had just turned 47 & had a whole life ahead of me. I had a New relationship & I was trying to live life as well as I could with a crap disease. I was and still not as disabled as some but I want My Life to be My Choice. I am still Not afraid of PML or whatever my come my way. I have had a wonderful Love Life that I would have missed out on had I not chose to take a risk on Ty :heartthrob:
MeSs is just a part of my Life these Days. It is Not who I am but it is a part of me - You all can argue all day long while I am out traveling, enjoying life, Having Great Sex:p and doing All of the Things that I would have missed out on if I was still shooting Avenox & hoping for the best.
I recently had a 3 tesla MRI of brain & spine and I have No New Lesions and everything Looks Great:D:D

I belong to a wonderful Ladies group. We have Lunch every other month. I also belong to a beading club. I play Bunco once a month and I'm going to 7 Feathers Casino next week. I went to a wine dinner a few weeks ago & had a Blast. I take cooking classes although I still hate to cook. My Honey is taking me to Santa Rosa for Vacation in May. We are going Salt Lake City in June. Just went back to the Bay Area to visit my son in Feb. I hosted Christmas at my home and enjoyed the Holidays with my Lovely Family.
There are more plans but not enough time to list all.......Sometimes I am too busy to do it all But the fact is that I am doing this stuff that 2 years ago were just good ideas but not really a reality in my Life.

I have a Life these Days that I was missing out on 2 years ago. Thanks to Tysabri I can enjoy these days...........Oh Yah - We have tickets to several concerts for this summer!!! I get front row seats since I am disabled. One of the perks - Parking and front row seats - Yipeeee for me!!!

I'm not saying Everyone should change their meds - Not at all - It's about having a CHOICE - My Choice!!!!!

Life is So Good these Days..........
Best Wishes to All
DD~