UPDATE - Angela's PML Struggle

by Akrista
(USA)

Hello Everyone,


Just wanted to let you all know about one of our members, Angela. Some of you may know her as a friend already and also know of her struggle over the past year. First a little background for those of you who don't know her very well.

Angela is the one behind the Flowers4MS Foundation (will open in a new window). If you don't know what that is, click the link to find out. She wanted to do something to help raise awareness and funds for the cure of multiple sclerosis.

She is known on YouTube as angelausa, where she shares her experiences with MS. About 2 years ago, she began taking the treatment Tysabri at the urging of her doctors. She shared her progress with the treatments on videos which you can still find on YouTube. After 22 treatments with Tysabri, she developed one of the worst side-effects of taking this medicine - PML - a brain infection.

This infection almost took her life life last year. She fought and won her struggle with PML. Although she won the fight, she still has an uphill struggle to regain her strength and cognitive functions among other things. She spends most of her days resting and can no longer write the long letters to her many, many friends like she used to.

She believes that she will eventually get back some of her abilities as she is working hard on this everyday. Not overdoing it, but as much as she is able. She is not there yet, but she can get there. This is why you may not have received a letter from her in a long while. She still thinks about everyone and wants you all to know that she misses you and still cares about each of you just as much as she always has.

If you wish to leave a comment for her, you can do it here on our site after her interview (you can read her interview by clicking the link below), or if you know her on YouTube. She may not be able to comment back, but she does read and appreciate your kind words. Keep her in your thoughts and when she is able, she will be back to share her story and how she fought her way back after a scary experience with Tysabri.

Drop her a line if you can to let her know that you wish her well,

Thanks for listening,

Akrista

PS: Here is her latest video talking about her experience.



Again, you can comment below.



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Oct 13, 2017
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Hubby Started Tysabri
by: Akrista

Hi Jon,
I'm happy to hear that you were able to take Tysabri for as long as you did. And sad that your levels got to high to continue. Yes, that is what kept Cir from trying it for the longest. Too many questions at the beginning. Now that they can test for PML throughout the treatment, he feels safer taking it.

So far, so good - 9th infusion was yesterday. Just did bloodwork, so we'll see how it goes.

Hope you find something else that works for you. Feel free to join our newest social site - LiSoMS Network - to keep us up to date.

Akrista

Oct 13, 2017
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Tysabri
by: Jon

I am so sorry to hear (belatedly) that Angela got PML.

I also am a Tysabri patient. I've been on it almost continuously since it was approved, with a disastrous 6-month break from it after I'd been taking it for 2 years. It has been exceptionally good for me - no relapses while on Tysabri, and some of my symptoms have even improved. But the axe of PML is always hanging over your head.

Found out from my MS doctor this week that my risk of PML had gotten too high to continue. I'll be switching to something else in the next couple of months.

Godspeed, and get well,
Jon

Jan 05, 2013
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thank you
by: chantel

My mom has ms and she was also taking tsaybri (cant spell sorry bout that):) she found out just a couple weeks ago she had pml and it was so scary. Everything I read was horrible and I just knew I was going to lose my mom. I have prayed so much and have everyone I know to pray and it is by the grace of God her's was caught early.
She is back home now out of the hospital. Her doctors have now told us to be watching for (iris) symptoms because it can be really bad as well but we will continue praying and I will also be praying for you. I thank you so much for putting your story out there. It helped give me hope. I hope you are very blessed and get along and better soon. I would love to hear from you when you are feeling better. My e-mail is grayndrob@gmail.com

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