PML Progressive Multifocal Leukoencephalopathy

[Sumpfhexchen]

Was tested positive on JC-Virus after three years Tysabri

GREAT...

Waiting and hoping the best?

[Banjibwoi]

My Partner of seven years is now bed ridden and hanging in there...at this time he can't talk, barely opens his eyes and has lost use of his entire right side of his body. Im hoping he will be one of the survivors but i'm so scared for him..this must be so hard on him. Do you remember anything about the time you were bed ridden?

[fluflufox]

thankyou for your story so very much

[gekiryudojo]

This poor sole is now dead :(

[Nikifuj908]

@ Everybody who wants to stop their MS drugs

Are... you... INSANE!? Progressive multifocal leukoencephalopathy is so rare... there's almost a 1-in-a-million chance (a hyperbole, for you word-twisters) you'll get it even if your immune system is compromised.

Multiple sclerosis is when the immune system thinks your nerve cells are germs.If you have MS, unless your immune system IS compromised, YOU WILL DIE. It'll sneak up on you like Count Olaf in a trench coat, and you'll be toast.

[PrincessPignatelli]

@Nikifuj908 @Nikifuj908

As things stand today, the chance is 1.16 in 1000 of getting PML from Tysabri.

the total number of cases of PML in patients taking Tysabri is 95. The total number of deaths is 20. These are figures from Biogen Idec, the manufacturers.

To anyone out there with MS, I would say check out overcomingmultiplesclerosis

Professor jelinek certainly saved my life.

[usuryfree]

I will be sending your video to many contacts asap. My heart goes for you. I will certainly tell my partner to stop her ms drugs. The irony is that it took years to have the courage to take those because she knew they were toxic. Stay strong and you have already helped a lot of people.

[curmudgeonine]

Thank you for doing your duty and getting the word out there. Clearly it was difficult for you, and you are to be commended.

[9gabbycats]

Thank you for the courage to tell your story! You are truely an MS Warrior! So much love and prayers for you!

[MSVlogSupport]

Thank you so much for putting this out there to inform others. I look forward to your other videos.

Sincerely,

Andrea

[DesertRoseJRTs]

Thank you for this info - I now know that I will not take certain MS drugs - MS is bad enough, wtihout having it compounded by this!!!

[946jim]

I lost my wife to PML in December 2008.

I cried as I watched you video as it brought back so many memories of her struggle with PML. As we both decided to

go on TYSABRI I now feel guilty that I could not do more. I was helpless and

I remember her saying " I AM GOING TO BEAT THIS PML" . There are now (7) more confirm cases of PML thru June 09.

I am concerned.

[Angela9198]

@946jim Hello, I just saw the video and my heart goes out to you. I started treatment with Tysabri almost 10 months ago. My boyfriend and I decided that this treatment was best because it treats the disease for agressivley. I am so scared that I will get PML. I'm thinking about stopping the treatment and using something else. I'm so afraid. I can't stop crying.

[rod4cock]

hi i was quite impressed by your video. i am myself a patient of PML. i got this becuse of HIV.I AM SUFFERING FROM LEFT SIDE HAEMIPLIGIA. doctors tells me that i have chances of living if i take ART.i am prepared to experiance worst. plz comment on this

[chalinosnchz]

@rod4cock

Hello i am a Medical Case Manager on HIV/AIDS patients and i have a patient w/ PML. He was diagnosed HIV positive about 3 months ago and started to have PML symptoms. I have seen him drastically deteriorate in a 3 month period. As of now he is attached to a ventilator and was struggling through a Pneumonia. I've researched and saw the possibilities to survive which are 50/50 on HIV patients. This gives me hope to share to my patient's parents, God Bless You much!!!!!!!!!!!!!!!

[rod4cock]

@chalinosnchz now cure is available for PML. a new antimalarial drug morphiquinine has been invented. it cures .

[chalinosnchz]

@rod4cock

Where do they offer that treatment?????????

[asayla70]

And I so need to get out of this anti-PML "funk" as I've come to call it. I've gotten to thinking of my meds as "glorified carcinogens" and actually have not taken a few of the doses...still never gone more than a day without them, but still. Not taking even one dose isn't really a good idea. Infact, its a rather bad idea. Imminent organ failure for not taking the meds vs. a remote possibility of getting brain destruction if you do....wonderful choice that is. okay i'm off to bed as its 1 am now

[asayla70]

the term is pronounced "Luko-ensef-alopathy"

Progressive Multifocal Leukoencephalopathy translates as "progressive wide-spread destruction of the white matter of the brain." The 'white matter' is called the meylin and its a protective coating on nerve cells.

Basically, MS attacks the white matter itself and the body fights to rebuild it. PML attacks the cells that build the myelin,so that it can't be "fixed". MS is like cutting off a branch and PML is uprooting the tree.

from wikipedia

[asayla70]

Thank you for sharing this.

I just found PML listed on my medicines as possible side-effects and am looking into it. Scares me because I'm a transplant patient of 16 years and have no idea if I have the JC virus. I actually had a nightmare that I had PML, I imagined it like my grandparents having brain cancer and Alzheimer. Scares the life out of me (almost literally) because I'm a 20s girl and whenever I'm a clutz or have a "brain fade" I think of PML, all the time.

[curepml]

My mother was diagnosed with PML in March 2008. We put her on mefloquine and it seemed to kill the virus. She has some significant deficits, but is alive! With such a grim prognosis, it can't hurt to try the drug. Maybe, just maybe, if it is taken early enough, it could save someone out there????

[PMLdisease]

galuemaumaga I am so sorry to hear that. I will write you privatly. So look for a PM sent to you on here.

[ReiReBo]

@PMLdisease

i ran into this browing around on the internet.. it does not sound fun. sounds horrible

but this man in the video.. you have a strong heart. the heart of a thousand and 1 bulls!

just thought id say that

good luck to anyone and everyone!

[galuemaumaga]

my daughter was diagnosed 3/4 months ago with pml , i'm her caregiver, thank you for your video, there is so little known about it, that you are kind of left on your own .

[mjzsea]

I was diagnosed with NHL-4, and 2.5 years of chemo... I admire this man, he is a modern day hero. Notice he doesn't cry for himself, but the ones who didn't make it.

Bless you Bob... your tears are not weakness, they are tears of empathy.. you are a HERO

[screenkiss007]

have just come back from UCSF doc there wants to give me the bigT I have crohns had useless chemo..6MP remicade! and all have given me everything from CHF to snapped achilles to that dam rash you just cant seem to live with.I had devastating news, options are running out I am interested in info on doc you are brave THANK YOU information is power what is black boxed today because of death yesterday indecision tomorrow, keep sending the word it doesn't matter about statistics it could be you

[PMLdisease]

screenkiss007 Thank you. I am sorry you are going through this hard time.

Stay in touch and tell me how you are doing.

Bobby

[7mumfred7]

I have Crohns too, and I expect to be on Ty some day. Yep the remicade and humira worked great for me, but only for less than a year both times, and then became useless. I ended up in surgery, but fortunately only once. But I have had a good spell this past year and am in a holding pattern for now. I say go for the Ty, it does not wear off, and the chances of getting PML are so so remote, crossing the road is way way more dangerous. And make a video here when you get on it, pioneer the way!

[ojosquelloran]

My heart and prayers for you and those who suffer this devastating illness, we can all do so much, I'm talking to all my friends about your video and sending them your link and also the info so we can contribute to it's research. Thank you for being so strong, I'm going through some pretty scary times myself but nothing compare to this. You are an inspiration, Thank you!

Ollantay

[PMLdisease]

Ollantay ,

Thank you very much. And I hope you get through your scary time. All I really want is to get people aware of this to avoid it happening to them.

Take care.

Bobby

[chrcoll]

Thank you for your bravery and strength.

I have been diagnosed and treated with PML about 6 months ago and not sure how long it was inside me before the diagnosis.

There is so little help ,and support out there and it is so refreshing to hear about your success.

I need support and help as my life has fallen apart in a million pieces.

I will be in touch!!

[PMLdisease]

chrcoll,

Thank you and please do get in touch with me. I would love to talk to you and help any way I can.

[chrcoll]

I left a message on your phone. Please call me back

"Christine"

[SpiderMan1307]

Hey, I just wanted to say thank you for subscribing to my videos, I really appreciate it. You have wisdom and seem to be a very kind hearted person. Take care

[PMLdisease]

You are welcome Tim and thank you for commenting.

Be good to yourself and others.

Bobby

[DrakeAlturas]

not a problem, we all need to evolve...

I've found that the best way to reach that goal is to teach the uneducated (or help them learn), it feels like it's uplifting our collective unconscious.

[PMLdisease]

DrakeAlturas

Very true.

[DrakeAlturas]

It's not often I see so much raw emotion in a youtube video, thanks for the information...

sounds like this thing really tore a few bloody holes in your life, sorry to hear it man :(

I'll feature this on my page to get it some attention, it should work, since i hit the front page of most viewed this week... so hopefully we'll get some people educated

stay strong ;)

[PMLdisease]

DrakeAlturas

Thank you Drake so much. I comment you for being a young man and not being uptight about showing your feelings.

Thank you very much for putting me in your favorites.