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Old 06-25-2009, 10:11 AM #8
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Riverwild Riverwild is offline
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Riverwild Riverwild is offline
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Join Date: May 2007
Location: Heah!
Posts: 2,921
15 yr Member
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Quote:
Originally Posted by Natalie8 View Post
I find this story to be very confusing. I thought PML was a very fast moving disease that brought death or disability very quickly. I am not aware of copaxone and steroids causing PML, although I guess she is saying she already had PML when she went on these drugs? But again wouldn't it have moved and multiplied extremely fast? There seems to be something missing here in the story. HIV? Other immunocompromised disesases besides Hashimotos? Is there any way this story can be verified? Whatever she is suffering from it sounds very sad.
Natalie,
I corrected that statement under the post about the last PML patient. It seems that it is a very slow course until it reaches the brain and becomes noticeable.

This person seems to be saying that she had PML and was misdiagnosed. It's possible her immune system was fighting it and that by adding in the drugs she was on, it reduced the effectiveness of her immune system's fighting the disease.

I wonder if that's why they find JCV in blood tests of patients and NOT in CSF, because their immune system is fighting it or keeping it in check?

There's just so much we don't know yet...

I'm on another search for information for this now...
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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Tysabri withdrawn from market 02/28/05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!
.

I'm doing alright and making good grades,
The future's so bright, I gotta wear shades!
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