PE,

My dizziness was caused by the whole vision thing. I had ON as my one and only symptom before diagnosis in Sept. 2004. No pain, just the loss of vision in my right eye.

The next relapse I had the dizziness along with nystagmus and oscillopsia as a result of ON. It kept coming back with every relapse, and I am not sure if it ever really left, since I was relapsing every three months or so. My cognitive function was affected, it caused unrelenting fatigue from trying to compensate (IMO) and when questioned, the neuro I was seeing at the time said the cause of the dizziness and all the other stuff could not be attributed to only the ON, because I had MS!

I started Tysabri in May of 07 and within six months my vision was clear, the dizziness was gone, the nystagmus was gone, the cognitive stuff was gone and the fatigue was reduced. I still have fatigue, along with stiffness and spasticity, but baclofen and provigil relieve them. I was able to cut back on the dose level on both medications since starting Tysabri, now doing half or less of what I was taking before starting infusions. My vision level is back to prediagnosis level. I haven't had a relapse since I started Tysabri. Every MRI since the first one I had at the six month mark has shown improvement, no new lesions, no enhancing lesions and lesions either gone or greatly reduced in size.

In short, Tysabri has given me back the life I had before diagnosis. I truly believe that if it hadn't been withdrawn from market and I had started on it when I was scheduled to in March of 2005, I wouldn't have the spasticity and stiffness and fatigue I am still dealing with. I believe that there is still a chance that I may see ongoing improvement.

I know Tysabri doesn't work the same for everyone, but there's always hope, and it HAS given me back the life I knew before MS. :)

(btw-Bacardi and Coke DOES plump up the veins! I laughed at "better living through chemistry cause it used to mean something totally different to me too!)

Polar: good luck with the Tysabri!! I really hope it's successful for you. :)

RW: slowing down the infusion worked like a charm. Two days later I am just about recovered and only had mild tolerable side effects. Way better than the 5 days of complete and utter misery. I was sick as a dog the last time. So I'm very happy! :yahoo:

My opthalmologist was the doc who originally said "MS"

I went to him after the vision started closing up in my eye. I told him my pupil wasn't contracting and expanding properly. After a few days of tests he said "I think you may have MS" I started laughing because I was sure that it was going to be "brain tumor"

I told him MS was a whole lot easier to deal with. He cautioned that it could be many other things and made me an appt. with a neuro and scheduled the 3 day IVSM. I saw the neuro two days later. He was of the mind that it was CIS and did all the standard tests, bloodwork, MRI, LP, etc. When the tests came back he said he thought it was MS but since I hadn't had more than one incident he was still listing it as CIS.

Like clockwork, within a few months ...relapse...IVSM...relapse...scheduled to start Tysabri...removed from market...Copaxone...no help...and finally ...Tysabri. I did my homework back before it was withdrawn from market, searched out every detail about when they started working on it, who was involved in the development, made myself a pain to those people for MORE details, talked to people in trials, learned way more than I ever thought I would about neurology and science, fought to bring it back to market with a whole lot of other people and I haven't looked back since.

None of it was easy. It took a long time to find a neuro who would prescribe it when it was returned to market, but I was prepared and I found him right in my back yard! He's my partner in my brain health now and I trust him completely. He fills me in on the details that he gets and I fill him in on what I find out. He says when I stop searching for more info, that is when he is going to start worrying about me!

Yay Natalie!!

Praying that each infusion gets easier now!!

Hey, we're on page 99! :eek:

YAY!!

13 more posts and we lock this thread and open TY2!!

Whoohoo! Ty 2!!! Let's have a party!

Polar, I started with optic neuritis also (like RW too). It was mild but always kind of lingering. Since I have been on Tysabri my vision has gotten crystal clear. Sometimes it shocks me...I'm driving around at night looking at signs or walking in the grocery store just looking at stuff and every thing is so sharp--like scary sharp!! I've always had glasses/contacts but don't ever remember my vision being this good, even after getting new lenses. My neuro told me that the top 3 things Ty. was especially good for were 1) eyesight 2) fatigue 3) cognitive issues.

Just reminding...don't go over the 1000. :D

Make a new thread and I'll sticky the new one also. (close the old)


ADDED:

This thread is now closed. It will be left in the Stickies. Here is link to the new thread. http://neurotalk.psychcentral.com/thread84538.html