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Old 04-15-2009, 09:08 AM #31
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Riverwild Riverwild is offline
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Join Date: May 2007
Location: Heah!
Posts: 2,921
15 yr Member
Riverwild Riverwild is offline
Magnate
Riverwild's Avatar
 
Join Date: May 2007
Location: Heah!
Posts: 2,921
15 yr Member
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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 I truly believe that if it hadn't been withdrawn from market and I had started on it when I was scheduled to in March of 2005, I wouldn't have the spasticity and stiffness and fatigue I am still dealing with.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!)
__________________
I know the sound the river makes, by dawn, by night, by day. But can it stay me through tomorrows that find me far away?


.
I have this mental picture in my mind of you all, shaking bones and bells and charms, muttering prayers and voodoo curses, dancing around in a circle of salt, with leetle glasses and tiny bottles of cheer in the middle...myyyyyy friends!

diagnosed 09/03/2004
scheduled to start Tysabri 03/05
Tysabri withdrawn from market 02/28/05
Copaxone 05/05-12/06
Tysabri returned to market 06/05/06
Found a new neuro 04/07
Tysabri 05/25/07-present
Medical Marijuana legally 12/03/09
.

Negative for JC virus antibodies!
.

I'm doing alright and making good grades,
The future's so bright, I gotta wear shades!
.
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