Glad to hear things went well, Maryann!

Like the others, it took a few infusions before I started noticing results. I wouldn't even post on what was happening for the first six months since I didn't want it to be wishful thinking. What I noticed was a gradual improvement, the little things, like not being as tired, not having to work as hard to compensate, vision clearing up and returning to normal were my most marked improvements early on, and the dreaded MRI that turned out to be the first one that was GOOD news!

After stewing over this daily for too many weeks, I am going ahead with infusion #32 on Thursday.

I'm choosing my quality of life over my fear. For me, this is the only way I can go and live with myself. I won't let fear control my life. It's like running a river, you look ahead and evaluate where you are at every stroke. Sometimes you run the rapid, sometimes you portage. I'm gonna run this one. I may portage the next one, I'll decide when it comes, with all the information that is at hand, but for today, this is my choice. I guess I'm a high risk kind of girl.

OTOH- I rebalanced my retirement portfolio today, locking in the recent gains, and eliminating a few of the riskier choices, adding in a few safer options...:Dunno:

I wish everyone well. :grouphug:

I hope all goes well for ( all of us:)) you.
I still keep reading 16 of the 24 cases were in EU with 60% of us users in the U.S.
I will go for my 40th on the 25th of this month!
Linda

Keeping you all in my prayers to stay safe and well..:grouphug:

I'm actually relieved that I'm off of Tysabri. I was feeling sort of worse at times, and since my MS wasn't really that bad when I started, I figured I better take a break just to be safe. I don't know if I'll go back on it or not.

I'm very happy for those who have had great improvements or stabilized symptoms while on Tysabri. :grouphug: I had some improvements but not enough to stay on it for this long especially with the recent events.

RW... :hug:

Wiz, if I had not had so much improvement while on Ty I wouldn't go for another infusion either. But, it has really made a difference in my QOL. I've been in California visiting my grandchildren for the past week. I really don't want to go back to the way I was before Ty. I'll have my 27th infusion on Friday. After that I'll take it a month at a time...........and ask my neuro for constant monitoring and advice. Since my neuro does not give me my infusions I know she has my best interests in mind. And, she, too, is concerned and is looking into other options.

If Ty didn't really improve your QOL Wiz then you are better off being safe than sorry!!!!!!!!!!!!!!!!!!!!!!!! That's just my opinion :)

Take care...hugs,
Shayna

I like that everyone is making the best decision for themselves -- you can only assess your situation, the risk/benefit profile, and what knowledge you have and then go from there. :) :grouphug:

Polar I can't believe you are up to #8 already! Maryann, I didn't notice anything until probably the 6 month mark except for my vision. The vision got sharper early on.

I will probably go off Tysabri at #24 (I've had 17 infusions) since my MS was extremely mild when I started (there were no post-marketing PML cases at that point!) The pills look promising but they come with their own set of issues (cancer is one of them which scares me too). I can't tolerate Copaxone or the interferons so it is looking like the pills -- but I will reassess next spring. Who knows...I may have a different set of facts then.

Well, infusion #8 is done and in the books. Everything went fine, except that I was a little cheesed off that I missed the only two hours of sunshine today :mad::)..
Natalie, I wish it would do something for my vision. It's nearly 20/20, but they don't work together like they should now and any little vibration, like sound or even something small like taking a step, throws my vision off and makes me dizzy. Maybe someday....

Glad to hear # 8 went in with no problems, Polar! :)

As to the vision thing, I had the same problem.

I never knew when it was going to go wonky on me. I was dizzy when I needed to have it together, my brain fought with what I saw all the time, causing massive fatigue and cognitive difficulties and vision was my worst problem, followed by all the stuff it caused!.

It was such a gradual thing, I just thought I was learning to live with it or adjusting to it or something. It wasn't until I went to the ophthalmologist and he kept testing me that I knew something was up. He was the doc who told me that in his opinion, I had MS. I'd been seeing him regularly from July 04 until Dec. 06, and then didn't see him again until Nov. 08.

When he sat down in his office with me and asked me what I was on for treatment, I asked why. He told me my vision was back to pre-diagnosis level and he was amazed. I'd been tested several times after diagnosis, and there was always something wrong, something new noted on my chart, a new word I had to go home and look up- diplopia, nystagmus, etc.

He had me walk up and down the hall repeatedly, hop on one foot, hop on the other foot, turn around several times, more follow the finger stuff...I was starting to feel like a circus act! He kept shaking his head and muttering that he had never seen this before. He asked all sorts of questions about Tysabri, and took notes. He told me to just use my glasses from pre-diagnosis because I didn't even need a new prescription.

He sent his report to my neuro and followed up with a call. At my next appointment the neuro was grinning and said "so you saw the eye doc?" and showed me the report and told me about the conversation. He said the ophth. kept saying how in all his years of practice he had never seen recovery from such a severe degree of eye problems from MS/ON.

I'm telling you all this so you will know that there's hope. The longer the inflammation is held at bay, the more repair that can happen, and there IS repair. It's gradual and you may not even notice it's happening.

I hope it works as well for you as it did for me. :hug: