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Old 03-21-2009, 03:41 PM
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Riverwild Riverwild is offline
Magnate
 
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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Raises my hand...same here. When I was first diagnosed the ON was severe and sudden and I didn't know anything about IVSM, so I did as I was told. They forgot to tell me about the side effects!

I didn't like being up for 80+ hours, the horrible rage that would sweep over me without warning for no good reason, the stomach thing, etc.

Three months later, another round for another relapse. I made it through two of three infusions and that was it.

Three months later...oral prednisone.

After that if it wasn't a severe relapse I just called and let the doc know what was going on and refused the steroids until the month before I went on Tysabri when the new neuro convinced me that I needed another course of steroids and I did a three day high dose run of oral pred again.

That was in May 2007 and I am hoping I never have to do them again!
__________________
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?


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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Tysabri withdrawn from market 02/28/05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
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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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SallyC (03-21-2009)