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Old 06-24-2009, 05:29 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 Riverwild View Post
PML has a pretty rapid course. It starts affecting the brain before anyone usually notices what's happening. That's why you have to be vigilant to any changes. Confirming it on MRI means the damage has already started.
I need to correct this statement. PML actually starts out slowly. It is under the radar for a long time if not detected before it reaches the brain. It is when it reaches the brain that it starts to do the rapid damage that gets noticed, leading to MRI and diagnosis.

This is a link to another board where a person with PML has posted:
http://forums.wrongdiagnosis.com/showthread.php?t=49456

This person's experience is VERY compelling and a good warning for all of us on Tysabri AND for people searching for diagnosis because their signs and symptoms don't fit the norm.

If you are on Tysabri, be vigilant. Changes in vision, thinking and behavior are signs that something is wrong. You may be in relapse, but relapse isn't seen very often in people on Tysabri and the protocol is RULE OUT PML first before treating relapses with steroids.
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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Tysabri withdrawn from market 02/28/05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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