Here is Angela's "My PML Story". If you visit regularly, you'll remember that I wrote a short note here at Angela's request to let everyone know why she hadn't been keeping in touchlike she used to. (You'll need to scroll down to the bottom to find - Angela's PML Struggle). Here in her words is her story.
While I never wrote a “report” of what happened to me in English, I wrote a letter to dear friends and family members and, through Facebook and YouTube themselves. My husband kept people informed of what was going on while I was in the hospital dealing with a new battle of my life that I never knew was going to happen to me. After doing 22 infusions of a medicine that I hated from day one and that I (had) refused to take from the very beginning.
Tysabri seemed to be the doctors’s favorite drug to suggest and push to me over and over, to give me a first battle to fight, the one with all the doctors that never listened to what I really wanted, felt and wanted.
One infusion after the other, I went all the way to the city of Baltimore, in the state of Maryland and there are still people that say that going all the way there, believe that my life was saved by the knowledge that I was finding at the Johns Hopkins hospital, where I went for my infusions.
And also here, I had my neurologist, Dr Peter Calabresi, that took care of my care and that was the frst person that got things moving after finding out I possibly had the PML. Since I am dealing with a lot still, I ask that, if you are interested in this matter, you go check out the explanation that the medical world gives of PML.
Anyway, in my letter, I would like to share my personal story making it easier to learn about what can happen to people that take the MS drug made by Biogen, an American pharmaceutical company that, in my mind, except having nurses always ready to tell me about the risks of the drug, never offered me the possibility to do the JC Virus test. (I will tell you more about it later, hoping I remember to.)
After coming back from my homeland, (Italy), and mentioning having some visual problems, I was "checked" by the neurologist that followed the Touch program - (The Touch Program was created by the company to have doctors follow the patients very closely). Even if I didn’t want to do the infusion because I felt I was being ignored and no one was paying attention to my symptoms and my worries, the infusion number 22 was performed and I was told that, in case something would have changed, I would have called the doctor right away and let him know if there were any changes, which there were.
I went for a little walk and, on the way back home, my husband noticed that my speech was slightly different. So lightly different that he had to ask me many times to speak, to say something and it was then and there that he noticed that a side of my mouth was a little lower, looking like I was having a stroke or something similar. We called Dr Calabresi and pretty much we freaked him out telling him that I was experiencing a very light “facial paralysis” (they like to call it this way) and that got things moving very quickly.
I was told to drive to Baltimore as soon as possible: Hopkins was getting ready for me... And so I went right away and as soon as I got there, of course, next to an MRI, I had a spinal tap done. The spinal fluid/liquid taken was sent all the way to the lab in the American government because there they have the best machines (that the famous hospital doesn’t have) to have it tested and it was there that I received the sad and scary news…
I did have PML, the medicine had woken up the JC VIRUS that the 65-75% of the population have in their bodies and the virus is dormant until something like Tysabri that has something to do with immune system, wakes it up causing the worse thing it could ever happen to an individual already affected by multiple sclerosis.
Tysabri was the cause of my fast and progressive PML, which started slow with the facial paralysis, and then moved quickly becoming more and more dangerous. The good and amazing thing was that I never stopped walking… I became incontinent, which I still am, a year after the ordeal, and I had no cognition, no memory, felt extremely dumb and ignorant. I didn’t know who I was.
I had to have nurses change me and do everything for me and now I will tell you about something that sounds and WAS scary, but that, with my Italian letter that I ask you to translate yourselves because I wrote in my language and not in English, I actually make fun of the scariest moment of my 6 week stay in the hospital. And I love the fact that I did it this way, not only because it proves that food is important for all of us (especially Italian people) but that, if you have a reason to go on, even if it sounds stupid to some, should be respected and followed, in case of need…
I am not embarrassed and I will never be: my culture, my love of food, my desire to get into the little things of life, gave me the power to smile in the worse situation of my existence and gave me a possibly silly reason to hold on and to continue fighting…
This is what I wrote in my language to many of my dearest friends and ask you to please translate it, not only because it might be interesting to you, but because it might make you smile… Yes, instead of talking about death and that’s it, I chose to make jokes, to see the very few little things that I found funny and they make me smile to this day. Please, if you're ready and interested to learn something new and to smile, read this letter, translate it and enjoy it because life (or death) are very close to one another and we shoudn’t fear any of the two… enjoy.
Remember that, while I will try to do my very best to answer your questions, I have lots of things that I can’t do any more and that, if I do them, they take me lots of time… Please, be understanding, if I don’t get back to you fast and IF I don’t participate to this site very much any more. I hope you are all doing much better than me and that your journey is proceeding with you being the strong one, the fighter, and the WINNER.
Please, take good care and have a good day,
You've just read "My PML Story" by Angela Sergio Cleary. I will be adding a form soon so that you can add your comments. I will also add a link to her story in Italian soon. I won't be able to edit, because I don't know the language, but I'm sure you'll get it.
I consider Angela a dear friend even though I have only met her over the internet - through our websites. Her story is heartfelt and I hope you will take the time to read it if you are considering Tysabri. The chances are it may not happen (that you will develop PML), but then that's just it. It's a chance you have to decide to take because it could just as well happen to you.
Look for the comment box coming soon, to share your thoughts with Angela. And share "My PML Story" on Facebook and Twitter as well as with your friends and family.
PS: Here is her latest video (as of this writing) talking about her experience.
If you'd like to go from My PML Story back to Angela Sergio Cleary Part 3, follow this link.
To read Angela's Original Story Part 1, start here.