Tysabri makes me feel great!

Hi everybody. I have I guess you could say bittersweet news today. I'm going to start with the sweet news, and that is it is exactly one year since I got in my rollover car accident and was in the hospital when my relapse first began because I was in that horrible car accident. It's been a year, I had my relapse, I'm better, I'm over it, I'm on a new medication, and I feel fabulous. That's the sweet news. I feel great. I prayed to God. I said, "Just let me be okay in one year," and here I am. I'm okay, and I'm very grateful. So, that's the good news.

Now, this next part is something that I think is very important. It is
about how there have been two confirmed cases of PML in Tysabri patients. I
want to make this very clear, because I know that it can be really scary
and really terrifying to hear about, read about, whatever.

I participated in a teleconference with people from Biogen Idec, and I
would like to relay the information that I received from that phone call so
that you have accurate information. What happened was on July 30th and July
31st, the confirmed cases of PML in patients that were taking Tysabri were
in the European Union. The first patient was on monotherapy, which means
they were only taking Tysabri, for 17 months. They are currently clinically
stable and are at home. The second patient was also on Tysabri as a
monotherapy for about 15 months, and they are currently hospitalized. But,
they are both alive and they are both getting treated.

They were both closely monitored by physicians while being on Tysabri, and
they had signs and symptoms of PML. My question was, what were those signs
and symptoms. How did they know that it was PML?

The whole thing about the TOUCH program... At least in the United States,
we have the TOUCH program. You can only get Tysabri through the TOUCH
program. The whole purpose of it is to monitor your process of taking
Tysabri. Before you can even get the IV in your arm, you have several
questions that you have to answer.

I've talked about this before in some of my videos, but you sit there and
wherever you get your infusion you sit with a nurse or whoever and they ask
you several questions. Have you noticed any changes in your vision? Have
you noticed changes in your balance? In your eating? In your health? In
everything, have you noticed any differences? If you don't report it that's
not good, because that's what the TOUCH program is for. They're looking for
changes in your health which could potentially lead to PML.

Now, doctors still recommend Tysabri, because at the end of June 2008 more
than 31,800 patients worldwide were on Tysabri. In the US, more than 17,800
people were on Tysabri. Outside the US, more than 13,000 patients were on
Tysabri. At the present time, doctors believe that the benefit risk profile
remains favorable for taking Tysabri.

Again, like I said, I was really scared. How did they even know it was PML?
Well, you have to be really cautious. You have to be really careful. You
can't do anything that they tell you not to do. You can't take another MS
drug while you're on Tysabri. You can't take another immunosuppressant drug
while you're on Tysabri.

For me, it's worked out extremely well. I called my neurologist right away,
and I asked Dr. Cullis. I said, what do you think. Because he had heard
about it. He said, you know what Lauren, you have improved so well and you
are doing so extremely well on Tysabri. He said, two people out of, what's
that number again? 31,800 people. That's a very small percentage, and if we
start seeing any differences in your health or you start having minor
symptoms that are bad or that are different then we'll go from there. But
for now, he said, you're doing so well that I have no reason to take you
off of Tysabri.

It was a huge sense of relief for me, because I love Tysabri. I just feel
so wonderful, and I haven't felt this great in a really long time. I'm
really not scared of getting PML, I'm really not at all. Because I do
everything they tell me to do and I'm feeling great.

1 Week after Tysabri and I'm walking great! PLUS: BEWARE! Steroids make you feel like you're on... I don't know what makes you do that... what, cocaine or whatever. I don't do drugs, so I don't know.

Hi everybody. It's me again. Okay, today is 1 week since my last Tysabri... or my first Tysabri infusion. 

And I feel great. I am walking really well.

And I still have tremors,  my neck shaking, but I... it's so funny because I don't know what it looks like because, like, I'll look in
 the mirror because I want to see what my neck looks like and my tremors look like.  But I can't tell because I look, and my neck is shaking. So I don't know what it looks like. But I feel really good, and I'm still keeping a really positive attitude, and I know that has alot to do with the fact that  I'm doing so well.

I called my family friend Debbie, who has MS, because I had a question.  I am not sleeping. Like right now, it's a little
after 6:00 at night, and I woke up at 3:00 in the morning, and I haven't slept since. So I've been up this whole time, but I'm,
like, bright eyed and bushy tailed, like, raring to go. And I, you know, cleaned my bedroom. My dad and I went to visit my
friend Chris Ewing [SP]. He's doing some film stuff for me right now. I'm editing some videos together for my family for
Thanksgiving. And I was wide awake, and I baked him cookies as a thank you. And then my dad and I went to the grocery store, and we just made a pot of chili. So I feel great. I'm doing really well.  Anyway, I called Debbie, and I asked her... I said, "Debbie, how
long were you, like, high off of the steroids?" And she said, "a
little while." And I said, "Because I'm, like, moving nonstop. I
am doing so many things. But it's great. I'm getting so much
done, and my mind is so clear."

And she said, "Don't worry, Lauren." She said, "The last time
that I was on steroids, I re-wallpapered the bathroom." And I
thought that was so funny because everybody laughs at me. You
know, I wake up so early, so when everybody else gets up, I'm,
like, Okay, listen to what I thought of this morning. And
they're like, let me have my coffee first. Because I've already
been up for, like, three hours.

But Debbie, she said that the same thing happened to her. So
beware, the steroids make you feel like you're on... I don't
know what makes you do that... what, cocaine or whatever. I
don't do drugs, so I don't know. But, anyway, I also had an
appointment with my family doctor, Dr. George Costea, who I
love, and he was so wonderful in the hospital. So, anyway, I had an appointment
with him, a follow-up appointment, and it went great. It went
really well, and we walked in, and he said, "How are you doing?
Are you walking?" And I was, like, yeah, watch, and I jumped up
and walked all over his office, and he checked on my vitals.
And everything is great except for my tremors. But they'll just
go away. It's scary because some people, like, in the hospital,
some of the nurses that were checking on me, they had never seen
someone with tremors. And then others, the nurse that gave me my
Tysabri infusion, she knew about it, and she said, "Just be
patient. They'll go away." It's easy to tell somebody that. You
know, it's really annoying, but things could be a lot worse,
they could, and I know that.

But it's not easy. My writing is still really terrible, really
shaky. And I can't read because my head is shaking, and so when
I look at the book, the words get all jumbled, and it's
frustrating. But I can lay on the couch really well, so that's
kind of what I've been doing.

And I wanted to go on the elliptical today because I was feeling
so great, but a physical therapist came this morning, and she
had me do some exercises, like, with a ball and weights and
stuff. And I was sweating a little bit . . . a little bit . . .
definitely not satisfying. But I thought, I don't want to push
it because then I'll be so tired, and it'll ruin my day.

But, anyway... oh, I know what I was going to say about Dr.
Costea. I told him... he's my family physician. And then my
neurologist is Dr. Paul Cullis, and I love them so much because
they're both very kind, sensitive, caring people. And, like,
being sensitive is important to me because I'm really sensitive.

And so I told Dr. Costea, I said, you know, most people don't
like going to the doctor except I love going to see my doctors
because I love my doctors. And it really does make a difference
because it makes the appointments more enjoyable. And Dr. Costea
is actually a family friend. He grew up with my dad, so I know
his family.

But Dr. Cullis, I joke with him all the time, and it makes my
appointments fun, you know. So I can't stress it enough about
being positive because I guarantee that it is helping me do
well. And I've always been a really happy, positive person.
That's just how I am. That's my personality. But I'm really
working hard. You know, I'm praying every day and working hard
at being really positive, and I think it's helping me. I'm doing
really well. My voice, I'm sure you can hear, is still kind of
shaky, and my head is shaky. But I'm walking. I'm walking really
well, and I can . . . I feel like I'm normal again. So that's
good.

I had another person, I went to Blockbuster the other night with
Anthony, and we went up to the counter to check out. And another
person, she said, "Oh, are you cold?" And obviously it's from my
shaking. You know, people, when they're cold or whatever. But,
you know, I looked at Anthony and rolled my eyes, and I was
like, yeah, it's cold outside, you know. But, oh well, it'll go
away... hopefully sooner rather than later. But that's life.
There's nothing I can do but be patient.

So, anyway, this is my report about my first week with Tysabri.

I'm doing great.

AMPYRA! Really Exciting Information!

Hi everybody,  this is about AMPYRA today.  It's really exciting information, and I thought I would share with you everything that I have learned, and hopefully I can answer some questions, but of course you can always look on the internet, which is what I did. I went on the MS
Society's website, and you can talk to your doctor, but I'm going to tell you information that I found.

AMPYRA is formally known as dalfampridine, which I had heard originally,
and it's Acorda Therapeutics. It was approved by the US Food and Drug
Administration in January for its ability to improve walking in people with
any type of MS, and I thought, oh my gosh, that's exciting. And then as it
says it is now available by prescription, and this is the first therapy
specifically approved to treat a symptom of MS, and it represents a big
step forward for many people who may benefit. And I just recently said in
one of my videos that we have a lot to look forward to. Well, this is just
one thing. It's like, "Oh my gosh! It's a medication that can help a
symptom," it's really exciting, especially for walking. I think this is
really exciting. And I'm sure many of you know there are several
medications available to help with other things like, spasticity, fatigue,
or depression, but until now, there was no pharmacologic treatment for MS-
related difficulty with walking, so that's really exciting.

And I had a couple questions, and so they're basic questions, but I thought
I would tell you what my questions were, and I'll give you the answers that
I've found. And basically, I wanted to know what AMPYRA was, exactly. I
didn't know if it was an injection, or infusion, I didn't know what it was.
So AMPYRA is a tablet which may improve the conduction of nerve signals in
nerve fibers, whose insulating myelin coating has been damaged by MS. So
if you have read about the damage to myelin sheath, that's basically what
this does. It improves the conduction of the nerve fiber, so that's cool.

And then the next question I have, how is AMPYRA taken? And according to a
company press release, AMPYRA will be taken two times a day approximately
12 hours apart, so once in the morning and once at night.

Next question, can anyone with MS take AMPYRA? It says AMPYRA was... I'm
sorry, "AMPYRA was improved for persons with any type of multiple
sclerosis." I thought, "Oh my gosh, not just relapsing or remitting,
that's really exciting," and it says, however, "The FDA's approval of
AMPYRA comes with a warning that the drug should not be taken by
individuals with a history of seizures, or by those with moderate to severe
kidney impairment." And the reason why you shouldn't take it if you have
kidney impairment is because there is danger that the concentration of the
drug will increase in the blood beyond the amount considered to be safe.

Next question. Can a person take AMPYRA along with other MS medications?
According to the prescribing labels, yes.

Next question. When a person take AMPYRA on an as needed basis or every
day? The answer is, this drug was designed to be taken two times per day
about 12 hours apart, like I just said, so that amount of blood in the
bloodstream is fairly steady. For that reason, taking it on as need basis
would probably not be helpful.

Next question. What would happen if an individual stops taking AMPYRA?
Would walking issues get worse? And I read that question on the internet,
and I thought, "That's just like taking a drug holiday," and I recently
made a video about that. And here's the answer to this question. It says,
it appears that if a patient stops taking AMPYRA, the walking ability in
most individuals returns rapidly to how they were before they started
taking AMPYRA. Some people in clinical trials of AMPYRA experience a
worsening of their MS symptoms when they stopped taking the medication.
The FDA determined that the risk benefit ratio for AMPYRA is satisfactory.
And I read that, that's exactly why I don't want to take a drug holiday. I
figure I am doing so well now, that I fear that if I stopped taking my
medication that I would get worse, and my MS would change or get worse, so
that's why I have continued taking Tysabri, I've had my 30th infusion, I
feel amazing, and I don't want to make any changes, so the same goes for
AMPYRA.

And it says, oh, this is the last question, what are the potential side
effects of AMPYRA? In the first phase three study, common side effects
experienced were back pain, dizziness, insomnia, fatigue, nausea, and
bladder disorder. But I also made a video about side effects, so if you
haven't seen that video, you can watch that. Everything you take, whether
it's Tylenol or AMPYRA, have side effects, but it doesn't mean that if you
take it, you will get those side effects, everybody is different, and we
all know that. So those are just some reported side effects that some
people have had.

So I hope that this was helpful for anyone interested in knowing more about
AMPYRA, and of course, if you have more questions, you can talk to your
doctor. I hope you're doing well, getting ready or enjoying the spring
depending on where you live. It's really cold here in Michigan today, but
that's okay for me. I hope everybody is doing well, and I'll talk to you
soon. Bye.

Every person I've heard of that is on Tysabri is doing very, very, well.

Lauren: Hi everybody. It's Lauren again, and today is Friday, December 21st. Today is my brother Joel's birthday, and I'm wearing his big sweatshirt. And we just had a wonderful meal that my mom prepared. It was so, so, so great, and I helped her. I helped her a lot with it, so that was cool. And speaking of my mom, I owe her a huge apology. Last week I...It was a joke, I made a joke about her calling me Cinderella. My mom is my best friend, so we were totally joking around, and then mom was like, "I was offended by that," and I can see. I watched it, and I was like, "Okay, I did sound like a brat," but it was completely innocent, totally joking.  Mom, I love you and I'm sorry.

The meal was really good, so I told my dad, I said, "I want to film a
video, because I'm really trying hard to do this every week so you can see the progress of a relapse." My neck is still shaky and every once in a while my eyes will do that optic neuritis, and other things will happen. But I'm walking really well, which is great, so I feel normal, but I still have shaking and you probably can't see it but it's there. So that's how I've been feeling.

I wanted to talk this show all about medication. I've been getting a lot
of feedback, and thank you so much again everybody for writing to me,
because it helps me and I'm trying to answer as many questions as I can,
but if you have a question and I can't answer it, I'll find out.

I can call my doctor, I can look on line, make some phone calls. Please
write to me and I will find out and get you an answer. I wanted to thank
Steve, thank you so much for writing to me and I wanted to talk about
Tysabri, because I know you and many others have a lot questions about
Tysabri.

So I'm going to explain what I know about it, and you can, of course, read
up online or ask your doctor or get some information, but I'll tell you my
experience with it. I feel great. I've had two infusions so far, and I'll
have my third next Saturday on the 28th, the day after my birthday. And
I'm feeling awesome. So I don't know, and Joelle, I thank you for writing
to me too. She and I had a lot of similarities with the side effects from
the steroids and things like that. So we were communicating back and forth
and saying you don't know what causes what, and it's like, "Is this how I
would've been naturally or are the steroids still in my system, or is the
Tysabri helping? What is it?" It's like I don't know, but I feel good, so
that's okay, that's a good thing.

I know Steve, you and many others have questions about Tysabri are the same
questions I had before I took it. In the beginning, before they pulled it
off the market. They took it off the market and the reason they did was
because a few people died from taking Tysabri, and that's initially
frightening. Me, along with everyone else was like, "Why would I take it
if there's a chance of death?"

What happened was the people that died were also on another immuno
suppressant drug. Like one was on chemo therapy, and I'm not sure about
the other two, but, they were also on another immuno suppressant drug. You
can't be on an immuno suppressant drug and take Tysabri, because it messes
up your system. I don't know what it does medically, but that's what
happened.

So when you go in for the Tysabri infusion, which is one time a month,
which is awesome. You sit there with a nurse and she'll ask you several
questions, just because they make sure that you're not on another immuno
suppressant drug. Usually it takes about a half hour to get through the
questionnaire, and then they put the needle in. For me, they used my arm.
They can use your hand or whatever, but then the actual infusion takes an
hour. Takes one full hour and then after the infusion, you have to wait
for an hour. They stop running it then you wait, and just to make sure
that your body doesn't have any reactions to the medication.

So that's kind of what happens. And if you look, I show in some of my
videos. If you look back, I don't know how many weeks now. If you look
back you can see me getting my first Tysabri infusion. So you know exactly
what it looks like and what they do, and you can see it. I just wanted to
let you know that it's... Don't be scared about the people in the first
group that took it and passed away, because they didn't know they were,
what do you call it, Dan, in the beginning.

Dan: Test, test people.

Lauren: Like test patients, guinea pigs or whatever. So don't be afraid.
I was communicating back and forth with Joelle about how, right now we're
both kind of at the position where we don't know what is causing our bodies
to do what. It's like, "Are the steroids still in my system, or is the
Tysabri really helping me out, or is this just how I would've been
naturally?" Who knows? It's like you just have to go with the flow, take
it one day at a time and, maybe in eight months, nine months I'll be able
to tell exactly how the Tysabri is working.

But I'm functioning really well.

Dan: You got three minutes, and you were going to talk about how the other
injections were.

Lauren: Okay, I gosh, I always go too long. Real quickly, I only know one
other person on Tysabri, and she's doing extraordinarily well. So I say go
for it, talk to your doctor, and if you think you need to switch
medications, give it a try.

I was originally on Copaxone, and for me, I had horrible site reactions.
And if felt like I got stung by a bee every single day. And then I showed
progression in my MRI's, so Copaxone didn't work. Then I was on Betaseron,
and I was on that for four years, and it did fine for me, but that's when I
started having my relapse in July. And so my doctors said, "I think it's
time for you to switch medications," which is when I started the Tysabri in
August I believe, so, if you feel like your medication isn't working. Talk
to your doctors, talk do them. Do your research, look online, go to the
library, go to the hospital. Do whatever you can. All I know is that
every person I've heard of that is on Tysabri is doing very, very, well.
So that's pretty much all I have to say.

Dan: You have about two minutes. You might mention how far away you're
getting correspondence.

Lauren: I'm so excited about all of the people that are writing. Thank you
so much, too. I'm sorry I forgot your name, but there's some man from
Israel who saw my videos on Youtube, and they're people from all over. I'm
just so excited I could scream. I'm serious if you have questions, please
write to me. I will answer you, and if can't answer, if I don't know, I
can research and find out.

I'm showing what this relapse was like and the Tysabri it all happened at
once. Like my relapse and new medication, I'm trying to show you. So I
know, Joelle, said that you could relate to a lot of stuff that you were
seeing, and the emotions, it's like oh my gosh, you're not alone. We are
all in it together.

So write to me, I will respond, and hopefully, I'll be hearing from you
soon, and I'll be doing a video next week, maybe on my birthday, maybe not,
we'll see. But I hope you have a wonderful Christmas. Merry Christmas,
and happy New Year if I don't do a video. But I will see you next week,
bye.