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Old 06-19-2010, 05:54 PM
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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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Quote:
Originally Posted by Debbie D View Post
That's scary...wish they could find out why patients get this from Ty...
Long technical explanation?

The theory is that the JC virus causes PML. It is believed that approximately 50%+- of the world's population carries the JC virus, which lies dormant in the kidneys. When the immune system is depressed, it does not keep the JC virus in check and it travels to the brain and munches on myelin, causing PML (progressive multifocal leukoencephalopathy)

We don't know how people are exposed to the JC virus and we don't know why it goes crazy in some people and not in others. Most of what is known about the clinical presentation of the JC virus and PML was learned from AIDS patients. There is no vaccine or any way to rid the body of the virus at this time, although an attempt is being made to develop a vaccine.

There is a new assay, which is going into study in the next few weeks. Many Tysabri patients are signed up for the study. The assay checks to see if the patient has been exposed to the JC virus. It has a false negative rate of 2.5%+-. The results will be released to the doctors and
to the patients via their docs.

Patients can reduce the risk of PML by being vigilant and can go off Tysabri for a few months and their immune system goes back to normal. Theory is that the clock resets when you restart.
__________________
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Tysabri withdrawn from market 02/28/05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!
.

Last edited by Riverwild; 06-20-2010 at 08:18 AM. Reason: sorry for next day edit...wanted to add the last paragraph!
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