Angela has PML...

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

Postby Ruthless67 » Mon Jun 06, 2011 9:38 am

Any recent updates on Angela?

Is she home?

Back to work?

I have a sister of a friend who just started Tysabri, and is having transfusions every 4 weeks, she says her MRI's are better already.

I have read both good and horrific stories of Tysabri.........I wish the best for my friend's sister, Angela and all of us pioneer's & guinea pigs, we certainly need answers to this Puzzle called MS.

Lora
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Postby cheerleader » Mon Jun 06, 2011 11:01 am

Angela is home, but not doing well. The PML has affected her ability to write and speak. She remains a fighter. Here's a recent post on FB with info from her husband Keith---

Thoughts and prayers go out to those who continue to suffer with progressive multifocal leukoencephalopathy (PML), a deadly brain infection, due to their Tysabri infusions.

Let's all keep Angela Cleary, our brave and beautiful friend, in our hearts. Before being infected with PML, Angela was our very active translator of Italian press and research. She was born in Italy, but fell in love with an American man, and made the US her home. She has met Dr. Zamboni and was fund-raising for CCSVI before she became ill with a PML infection-

Here is her Facebook page
https://www.facebook.com/pages/Flowers4MS/154192398822
and her website:
http://www.flowers4ms.com/

Here is a recent post from her husband, Keith....

Angela has not been feeling up to spending much time on the computer, so she checks the comments on her FB page, but doesn’t really feel well enough to write back too often. Physically, she had been improving a little more each day. Unfortunately, she had a minor setback this morning. She woke up at 6:15 this morning and had a seizure. She then proceeded to have 9 seizures in the morning (7 at home, 1 in the ambulance and 1 at the hospital). Luckily, none of the seizures were too severe, however it has weakened her left arm and left leg once again, so she will have to continue her rehab just to get back to where she was yesterday. This was the first seizures she has experienced since the two she had on March 28th. She is home now and they have increased her medications to control the seizures. Hopefully, that will prevent this from happening again. She feels really guilty that she cannot converse or write back to all of you as often as she would like, but please know she appreciates all of your support.
Keith


Let's also keep Natalie Murphy in our thoughts and prayers. She was a pharmacologist before contracting PML, becoming paraplegic and losing the ability to speak. Her brave husband, Declan Walsh, stood up before Elan management last week, and asked the drug company to "make all resources" available to take care of his wife.

She's in a paraplegic state in Sligo general hospital and is unable to speak after she contracted PML in 2009 having been using Tysabri since about 2006. She's the only known Tysabri user in Ireland or the UK to have contracted the disease. PML is a known, but very rare potential risk factor associated with Tysabri. Only 124 PML cases have so far been identified among Tysabri users, while 23 of those patients have died.
Close to 60,000 people around the world are currently using Tysabri. Elan is currently rolling out a new blood test, so Tysabri patients can better weigh up the risks of taking the drug if they carry specific antibodies. Speaking to the Irish Independent following the AGM, Mr Walsh -- who established the Deferno Trust (defernotrust.org) -- said he welcomed the assurances from CEO Kelly Martin and chairman Bob Ingram that they'll follow through on his proposals.

These include the establishment of a PhD research programme into Tysabri-related PML, and the appointment of a specific patient liaison officer.

Mr. Walsh's wife is a pharmacologist and at one time she worked as a product manager with drug giant GlaxoSmithKline-- the company where Mr. Ingram was once vice-chairman of pharmaceuticals.
He added that Elan had failed to effectively engage with him last year when he first raised the issue of his wife's condition, which he estimates results in medical costs of about €600,000 per annum for the health service.

"There was absolutely zero interaction between Elan and ourselves. The only interaction was when she was initially diagnosed," said Mr Walsh. "I had to come here to try and make a point. My beautiful wife is dying. From the outset, I've made it quite clear I'm not interested in any legal suit."

http://www.independent.ie/business/grav ... 59525.html

THESE TWO WOMEN are connected by the Deferno Trust---
The Deferno Trust exists to provide support, to gather and share information on the Tysabri related PML illness. The Deferno Trust aims to connect PML sufferers, their families and friends and everyone that has been touched by Tysabri related PML. We will gather and provide facts and information for Multiple Sclerosis sufferers and their families so they are fully informed about Tysabri related PML.

Our mission is to gather data consistently on MS patients that have contracted PML through use of the drug Tysabri (natalizumab) and ensure MS sufferers are aware of the growing number of PML patient cases worldwide.
http://defernotrust.org/home
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Ruthless67 » Mon Jun 06, 2011 4:27 pm

Thank you Cheerleader for the update on Angela, even though it wasn’t news of a miraculous recovery like we’d all like to hear.

I read this today and wanted to share it and my visit with my Neurologist.

“What will be challenging is the 55% of people who will still have positive results, and what to tell them. Their risk of PML is four times higher than we thought it was, though still small: one in a few hundred instead of 1 in 1,000.”
Michelle Cameron, M.D., is a neurologist at Oregon Health and Science University, Portland. She has financial associations with Biogen Idec, Innovative Neurotronics, Teva Neuroscience, DJO Global, Mettler Electronics, and California Education Connection.



I went to see my Neurologist last week because I hadn’t seen him in 3 years. I had discontinued using the Avonex he prescribed, when my white blood cells got so low.

I have not had angioplasty, nor do I take any medication and I’m ambulatory.

Anyway, I told him I had not been using Avonex or any other medications. I told him I was using diet and upper cervical care. He did the usual diagnostic stuff then asked me what brought me in. I told him I was wondering if there was any new research on MS. Had he heard anything about excess iron in MS brains or issues with the veins of MS patients. He said Oh Yes, and blabbered on about Bee Venom and false hopes then immediately went into the sell of the new oral drug Gilenya.

I asked him if the “pill” was anymore effective than the shots and he said No. I asked him if the side effects and complications were still the same and he said Yes. I asked him if the “pill” would still suppress the immune system and he said Yes. I said, “That doesn’t sound so good.” Obviously the pill only improves the “delivery” of the drug, which he had told me was taken daily. At a cost of around $48,000 a year!!

So THEN he started extolling the virtues of Tysabri. I asked, “Oh, is that the same stuff that has caused 124 cases of PML with 23 deaths? I don’t think I want to put that into my body either.” He just looked at me and muttered something about my being “well informed” and we soon terminated the visit. He gave me a pamphlet on Gilenya and said to call the office if I decided to try it…………..

I’ll drop a couple of research papers off to his office next time I go into town. One of them about the Neurologist, David Hubbard, MD and his Foundation and CCSVI Research. Maybe he’ll read an article by another Neurologist………..Maybe.

Lora
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Postby Algis » Tue Jun 07, 2011 12:33 am

Thank you Cheer; much positive waves to Angela: hang on Girl!!
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Postby Cece » Tue Jun 21, 2011 10:07 am

www.youtube.com/watch?v=3GHgciDsRi0&feature=youtu.be
I just wanted to give you an update on how I am doing. I made this video in Oklahoma during my trip to Texas and Oklahoma. This was my first trip since being diagnosed with PML in October 2010.

Sorry for the windy background noise.

Also, please understand if I am not able to reply to every comment.

Thanks,

Angela
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Postby Ruthless67 » Thu Jun 23, 2011 8:16 am

Cece,

Thanks for posting Angela's video, it was so good to see her out of the hospital and with hope for her future.

Lora
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Postby CD » Fri Jun 24, 2011 10:17 pm

Angela you are such a sweet and mellow person. You are taking this all in stride.

Kudo's to you Angela for what you have been going through, yet you still do the updates video's for your friends and family.

I am so happy to hear that you are out and about and doing better. You are amazing. Enjoy your vacation and feel great soon. :D

We know you can't reply to everyone. But we can tell you how special you are.
Take care and be well.
Where there is a will, there is a way. "HOPE"

CCSVI Procedure December 2010
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