Angela has PML...

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

Postby cheerleader » Fri Oct 22, 2010 9:21 am

no update today....still waiting to hear from Keith.

Since Angela has a confirmed CCSVI diagnosis from Dr. Zamboni, we have patient advocates in the Baltimore area who are contacting the IRs in that very city who have treated CCSVI with angioplasty, and understand the implications for someone with a central line into the venous system. We hope these doctors will meet on Angela's case, and help her. Keep the good thoughts coming. Angela needs them.
thanks,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby magoo » Fri Oct 22, 2010 11:09 am

I hope she has a quick and full recovery. She is amazing and this situation is tragic.
Joan what you are doing is amazing. I hope the doctors help her soon.
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby scorpion » Fri Oct 22, 2010 1:45 pm

How in the world did this post become about CCSVI? This poor lady is in the hospital suffering from PML and there is concern that her CCSVI has not been treated? Good god. Positve thoughts your way Angela.
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Postby cheerleader » Fri Oct 22, 2010 1:49 pm

scorpion wrote:How in the world did this post become about CCSVI? This poor lady is in the hospital suffering from PML and there is concern that her CCSVI has not been treated? Good god. Positve thoughts your way Angela.


Yes, God is good. This is posted because many of us know Angela from her volunteer work with Flowers4MS. She has translated Dr. Zamboni's research and interviews for us, since she is Italian. She was diagnosed with CCSVI last summer by Dr. Zamboni, and speaks of it on YouTube in Italian and English. If you do not know her, it is of no consequence to the rest of us. I am updating a very close and committed community of friends, scorpion. Please let us be,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby scorpion » Fri Oct 22, 2010 2:11 pm

cheerleader wrote:
scorpion wrote:How in the world did this post become about CCSVI? This poor lady is in the hospital suffering from PML and there is concern that her CCSVI has not been treated? Good god. Positve thoughts your way Angela.


Yes, God is good. This is posted because many of us know Angela from her volunteer work with Flowers4MS. She has translated Dr. Zamboni's research and interviews for us, since she is Italian. She was diagnosed with CCSVI last summer by Dr. Zamboni, and speaks of it on YouTube in Italian and English. If you do not know her, it is of no consequence to the rest of us. I am updating a very close and committed community of friends, scorpion. Please let us be,
cheer


Whoops I did not read all your post. I was just confused as to why you thought it was important to mention that she was tested by Zamboni last summer and confirmed to have CCSVI and was not able to be treated in the same thread. Anyway I do not know Angela but it breaks my heart to hear her story. I hope the treatment is helping and that she is resting peacefully.
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Postby cheerleader » Sat Oct 23, 2010 1:32 pm

Good update today from Keith via Facebook---

She is currently doing well and is in a good mood. She is confident that she will be OK. She is not thinking too far ahead, but is taking things a day at a time. She continues to find ways to make herself happy. She has had 3 plasma exchanges so far and they all went well, although the central line catheter continues to cause pain. So far, 92% of the drug has been removed from her system. After 5 treatments, 98% of the drug should be gone. Her next treatments are on Monday and Tuesday. If everything goes well, she may get out of the hospital later next week, but we will be back and forth for additional testing, like an MRI to check the inflammation in the brain.
She has been experiencing strong electrical shock pain in her head, but has been refusing to take additional drugs for the pain. She has also been quite tired, since sleeping in a hospital is never easy. This makes her feel weaker, but she is still trying to walk and use her arm weights, she just can’t do as much as she would like to. Even is she has some blurry vision, it can’t be that bad, because she keeps commenting on the cute doctors…
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby PCakes » Sat Oct 23, 2010 3:03 pm

love this..
Even is she has some blurry vision, it can’t be that bad, because she keeps commenting on the cute doctors…

wonderful news...
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Postby Donnchadh » Sat Oct 23, 2010 4:38 pm

...hoping for the best.

P.S. And the neuros say the CCSVI liberation procedure is dangerous!

Donnchadh
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!
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Postby blossom » Sat Oct 23, 2010 8:59 pm

donnchadh, "ditto" to your comment. just hope she pulls out of this soon and is ok. i know i took a chance somewhat and got liberated and hoped for better results but ccsvi is still a work in progress. a yr. or 2 from now if not sooner i feel ccsvi will have many great breakthroughs. yet, they will say it has no merit or too dangerous or that we are desparate. "which i guess i am". but, they push these very very dangerous drugs to the same desparate people as we have been referred to as. and they do this with no conscience. grrrr!!
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Postby HappyPoet » Sun Oct 24, 2010 12:43 am

Oh, what a sweet angel she is... so brave in so many ways. She deserves anything she wants, including CCSVI testing/treatment.

Her sad, quiet tears melted my heart.
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Postby Badger » Mon Oct 25, 2010 9:02 am

I feel so sorry for you Angela, I hope you can pull through. God bless.xxx
<em>Badger
RRMS 2004</em>
Appt Katowice 23/24th March
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Postby Drury » Mon Oct 25, 2010 6:52 pm

So glad to have positive news on Angela.

Our thoughts and prayers are with her.

Drury
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Postby cheerleader » Mon Oct 25, 2010 9:28 pm

here's Angela in her own (English) words---

http://www.youtube.com/watch?v=X4aOG2UJDFA
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby cheerleader » Fri Nov 12, 2010 11:34 pm

update from Keith:

Hi, this is Keith. I just wanted to provide an update on how Angela has been doing. Things have been fairly stable this past week. The left side of her body (mouth, leg and arm) remains weak and her left arm has been losing coordination. Her symptoms are noticeably different than a few weeks ago, but not much worse this week.

She had an MRI yesterday and preliminary reports say there was no change from the last one. This is not necessarily a good thing since we did expect to see some new inflammation as a sign the IRIS attack had begun. This immune system response is supposed to help fight the virus, before they begin steroids. Her doctor will review the MRI himself and let us know next week what he reccomends.

Thanks again to everyone who has been sending their support. The love of all of her friends is what keeps Angela strong.

Thanks,

Keith
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Johnson » Sat Nov 13, 2010 12:57 am

Oh, my.

Strength, Angela. Forza!
My name is not really Johnson. MSed up since 1993
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