Angela has PML...

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Angela has PML...

Postby cheerleader » Thu Oct 21, 2010 8:23 am

For those who know our dear Angela of Flowers4MS--she has confirmed PML from her Tysabri infusions.
She is now in Johns Hopkins, receiving plasma exchange. Her husband has been updating us on her condition.

Angela has been our translator for Dr. Zamboni's interviews, since she is Italian born. She has confirmed CCSVI, but has not been able to be treated. She needs our good thoughts and prayers. Here is her charity where she has been raising money for CCSVI research:
http://www.flowers4ms.com/

For info on Angela's condition---
http://www.youtube.com/watch?v=lYPku4Fw1JE

cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: Angela has PML...

Postby prairiegirl » Thu Oct 21, 2010 9:09 am

She needs our good thoughts and prayers.

cheer[/quote]

The many, many heartfelt posts on her site and on CCSVI FB, are testimony to how many people have been touched by Angela's kindness and generous spirit. Hope she recovers well!
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Re: Angela has PML...

Postby Donnchadh » Thu Oct 21, 2010 9:25 am

cheerleader wrote:For those who know our dear Angela of Flowers4MS--she has confirmed PML from her Tysabri infusions.She is now in Johns Hopkins, receiving plasma exchange. Her husband has been updating us on her condition.

Angela has been our translator for Dr. Zamboni's interviews, since she is Italian born. She has confirmed CCSVI, but has not been able to be treated. She needs our good thoughts and prayers. Here is her charity where she has been raising money for CCSVI research:
http://www.flowers4ms.com/

For info on Angela's condition---
http://www.youtube.com/watch?v=lYPku4Fw1JE

cheer



What is PML?

Donnchadh
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Re: Angela has PML...

Postby bretzke » Thu Oct 21, 2010 9:47 am

Donnchadh wrote:

What is PML?

Donnchadh


Progressive multifocal leukoencephalopathy (PML), also known as progressive multifocal leukoencephalitis, is a rare and usually fatal viral disease that is characterized by progressive damage (-pathy) or inflammation of the white matter (leuko-) of the brain (-encephalo-) at multiple locations (multifocal).

It occurs almost exclusively in people with severe immune deficiency, such as transplant patients on immunosuppressive medications, patients receiving certain kinds of chemotherapy, patients receiving natalizumab (Tysabri)[1] for multiple sclerosis, psoriasis patients on long-term efalizumab (Raptiva)[2] or AIDS patients.

It is caused by a virus, the JC virus, which is normally present and kept under control by the immune system. Immunosuppressive drugs prevent the immune system from controlling the virus.

Brian

edit: definition from wikipedia.

http://en.wikipedia.org/wiki/Progressive_multifocal_leukoencephalopathy
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Postby PCakes » Thu Oct 21, 2010 12:00 pm

For Angela,

..touch her body with the warmth of Your healing Presence. Grant her courage to face the future.. and the comfort of persons who care about her as she reaches for Your loving Hands..
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Postby 1eye » Thu Oct 21, 2010 12:02 pm

Please, Angela, get better soon. You are needed and much loved. :)
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
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angela

Postby blossom » Thu Oct 21, 2010 12:33 pm

warmest thoughts and prayers to angela and her family. what a blow to try to be well and get this.
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Re: Angela has PML...

Postby Donnchadh » Thu Oct 21, 2010 12:36 pm

bretzke wrote:
Donnchadh wrote:

What is PML?

Donnchadh


Progressive multifocal leukoencephalopathy (PML), also known as progressive multifocal leukoencephalitis, is a rare and usually fatal viral disease that is characterized by progressive damage (-pathy) or inflammation of the white matter (leuko-) of the brain (-encephalo-) at multiple locations (multifocal).

It occurs almost exclusively in people with severe immune deficiency, such as transplant patients on immunosuppressive medications, patients receiving certain kinds of chemotherapy, patients receiving natalizumab (Tysabri)[1] for multiple sclerosis, psoriasis patients on long-term efalizumab (Raptiva)[2] or AIDS patients.

It is caused by a virus, the JC virus, which is normally present and kept under control by the immune system. Immunosuppressive drugs prevent the immune system from controlling the virus.

Brian

edit: definition from wikipedia.

http://en.wikipedia.org/wiki/Progressive_multifocal_leukoencephalopathy


Oh, I understand now; I had never heard of it before. I sincerely hope she has a complete and quick recovery.

Dia linn, I never took any "MS" anti-immune drugs.

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Postby L » Thu Oct 21, 2010 12:58 pm

Terrible news. I feel awful for her.
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Postby Cece » Thu Oct 21, 2010 1:00 pm

This is terrible news, I wish her the best to pull through this and work on recovery.

It was mentioned elsewhere that they've put a central catheter line into her neck, to do the plasma exchange to flush the Tysabri out. I can't even comment on the irony there. I hope she pulls through.

edited: it's the EV that's used. But still. I hate Tysabri yet I know there are people who have few other options
Last edited by Cece on Thu Oct 21, 2010 4:16 pm, edited 1 time in total.
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Postby Rose2 » Thu Oct 21, 2010 2:44 pm

speechless. Cheer, thank you for writing on behalf of all of us. I appreciate it. I can't read the Italian, so not sure how she is feeling today? thanks, Rose2
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Postby Cece » Thu Oct 21, 2010 4:18 pm

EJV / external jugular
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Postby Trish317 » Thu Oct 21, 2010 5:12 pm

Sending prayers to Angela and her family....
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Postby Algis » Thu Oct 21, 2010 8:02 pm

Speechless too... We know it happen but when it is someone a bit closer.... Best of all and a prompt recovery for the always present Angela :)
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Postby LR1234 » Fri Oct 22, 2010 8:19 am

Hope Angela gets better soon. My prayers are with her and her family.
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