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Old 04-16-2009, 04:59 AM
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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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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 I did my homework back before it was withdrawn from market, searched out every detail about when they started working on it, who was involved in the development, made myself a pain to those people for MORE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!
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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!
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I'm doing alright and making good grades,
The future's so bright, I gotta wear shades!
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"Thanks for this!" says:
ewizabeth (04-16-2009), Natalie8 (04-16-2009)