Living With MS

Discussing all aspects of Multiple Sclerosis, various treatments, including accurate information regarding Tysabri.

Wednesday, August 04, 2010

(this was me in the mid-80s)

My Tysabri Diary...

I had my 50th Tysabri infusion yesterday (50th? Yep, that's right-50)..., I'm still a little tired so I'll make this post short and sweet...,

I met two other current Tysabri patients at my infusion center yesterday, one was a young girl of 22 and doing great on Tysabri (she has been on it for a year now), all of her prior symptoms of numbness and tingling in her hands, in her feet, terrible balance, slight optic neuritis in her right eye, and a complete numb right side from her rib cage down, and severe cognitive problems have all cleared up 100% - with the exception of her cognitive problems, they've only cleared up about 75% at this time, but she notices every day she seems to get better and better, she was so happy to be on Tysabri!

The other lady that I met there was on her fourth Tysabri infusion (she is 100% wheelchair-bound at this time), and she was around 45 years old (I don't know how long she has had MS), but she also had terrible tremors all over her body when I first met her in the morning. I really didn't get to talk to her because I was busy being interrogated (LOL) by the young lady's mother that was there, and both of them were so excited about Tysabri.

But back to the other lady that met there, when her time was up (infusion and observation time), her husband came to pick her up and had her wheelchair ready for her, and she stood up unassisted for about 10 seconds before she sat down in her wheelchair and her body tremors has significantly subsided. She was so happy, she started to cry and everyone else there in the infusion center was crying and clapping at her small achievement! Man oh man, I just cannot put into words how wonderful it was to see her smiling, crying, laughing, and the look of hope on her face was absolutely indescribable, and before they said goodbye, she yelled out "I can hardly wait until I get my 5th infusion!!!" (LOL-I definitely knew that feeling! LOL).

Lastly, I received the following information from my friend Andre that created the "Fly for MS" website:

"I think you will be excited: in less then four weeks, we have managed to gain the official, active support of the National MS Society, the MS International Federation, and of virtually all the MS societies in the 28 countries we plan on visiting. Together, these countries account for 1.4 million people with MS, or 70% of all people with MS worldwide. "Fly for MS" stands to be one of the most impactful MS awareness events ever organized.

Just a week after launch, our website
( received visits from 41 countries around the world, as far as Australia and Indonesia, without any advertising or even a press release.

Also, we are now incorporated as a non-profit charity, with 501(c)(3) Federal tax exempt status filed.

Also, the NMSS will feature us on their webpage, which generates 500,000 hits a month, once we have the dates firm."

Pretty neat, huh?

Because I'm still a little tired, I'm going to go have a late lunch, so that's all for now..., until next time everyone, take care of each other...,


Love, Lauren :)