View Single Post
Old 05-07-2013, 03:45 AM
Riverwild's Avatar
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
Default

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!
__________________
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Tysabri withdrawn from market 02/28/05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!
.
Riverwild is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Grammie 2 3 (05-10-2013), Natalie8 (05-07-2013), SallyC (05-07-2013)