Hi Sal

I don't feel cured per se but I definitely don't think of MS every day. It will be six years this summer since my first symptoms and diagnosis and I haven't had a relapse (knock on wood, knock on wood, knock on wood!!).

Technically I'm clinically isolated syndrome (CSI) but the doc diagnosed MS off the bat based on the MRI and spinal tap.

Yes I still walk, run, think normally except when it gets hot outside. Then I have some cog fog and I slow down energy wise and my vision isn't as sharp. But once I cool down all is good. I feel incredibly lucky and I think going aggressive with the Tysabri a year after diagnosis was the right choice for me. I had a higher tolerance for risk.

I now only get it every other month. If I had kept on the every month path I think I would be at #62 or so. But #39 and I'm still doing well. (knock on wood yet again!)

I had never heard of that; would be interested to know if there is anybody else who follows an alternative dosing schedule like that.

[QUOTE=Natalie8;977565]

"I don't feel cured per se but I definitely don't think of MS every day."

When I read this by Natalie, I thought that was a perfect description of how Tysabri has made me feel too. I was scared to death about the thought of "messing with my immune system" but I wanted to choose what I felt would be the most effective treatment. Before I started Tysabri I had reminders of MS daily anywhere from mild to severe. Definitely a lot of brain fog, cognitive issues, fatigue, pins and needles to complete numbness, dysequilibrium/dizziness bad enough to keep me in bed. Since starting the MS, basically none of that except the fatigue, which has remained I would say 7-9 on a scale of 0-10. Adderall has helped with that more than anything I have tried in the past ten years. I feel like Tysabri has given me my life back. There were many times before I felt so bad I just wished I could die and now most days I felt almost halfway normal.... am SO THANKFUL.

Here is the info on the new test which I guess is flipping some people from negative to positive.

http://multiple-sclerosis-research.b...virus.html?m=1

Wow, I wrote a long message about the things I found out from my doctor and now it's missing from this thread!! Strange.....it contained more specific information for Tysabri folk than the one I posted in the general forum. Ergh.

Missing? Was it deleted and if so why? Sorry that happened.

OH WAIT....it's on the links sticky.!!!

Oh! I'm flaky....put it in wrong place!

Last month I had my 80th infusion After 4 - 6 infusions I noticed more stamina, better balance. Since my 1st infusion I have not progressed ..Thank G-d !! I do a lot every day, some days less and some days more but, ms does not stop me from what I choose to do. I wish I could go for long walks and dance like I used to. I wish cooking/baking were not so hard on me but, I can do them. Tysabri gave me back my life. Cure no but, a gift of my life that was slipping away, yes
Linda

Hey Sal, I feel a whole heck of a lot more normal than I did before Tysabri.

I was so angry!
I was angry at the way my life had changed, angry with the doctors who could do nothing for me, angry at the drug company for pulling Tysabri off market without at least TRYING to understand what had happened before it was off market, angry at having to use a drug that did not work for me, angry at losing a job I TRULY loved, angry at being tired, dizzy, restricted from driving because of the loss of eye control, misunderstood, misrepresented and just plain ****** that MS dared to happen to ME!
(obviously I got over that! )
I seriously couldn't believe that Tysabri was taken off the market when there were people who had already been on it for years during the trials, and I was in line and I wasn't going to give up until I was able to give it a good go.
WHen I started way back in 2007, I was relapsing every three months or so. It took a few doses, but everything began to turn around. I was scared to even post in case it was all in my head (placebo effect)
I waited for my first checkup MRI at 6 months before I finally posted what I was experiencing, because I knew it was real then!
Since I started, no relapses, no new lesions, no enhancing lesions, you know the drill. Am I cured? NO. Am I ok? ABSOLUTELY! Eyes under control, no dizziness, no cognitive carp, no problems with any of the stuff that was happening. I still have the spasticity and the fatigue, but I can manage that with a lil help from my pals modafinil, baclofen 'n cannabis
BTW, I ain't nevah been nawmul yanno!

Don't ah nose it!!