Living With MS

Discussing all aspects of Multiple Sclerosis, various treatments, including accurate information regarding Tysabri.

Wednesday, October 31, 2007

My Tysabri Diary...with Halloween fast approaching, I wanted to send a very quick note to everyone wishing you all a very safe and happy Halloween night.

The photo above reminds me so much of my Champagne golden retriever who has now passed on... he was such a goofball, and born two days before Halloween. I think that was his favorite holiday, with Christmas running a close second. He used to get such a kick out of the young children that came trick-or-treating, and if any of them were too scared to come to our door (my ex used to put out very scary decorations), he would pick up the jack-o'-lanterns full of candy and take them out to the sidewalk where the children were crying. He would sit down and just hold the jack-o'-lantern in his mouth by its handle, tail wagging the whole time.

The parents of the children that were crying would just smile and laugh while consoling the younger ones, petting him on his head and then coaxing the younger ones (who had finally stopped crying by that time and were also petting him) into reaching into the jack-o'-lantern for a piece of candy. It was just sooooo sweet to see. I usually used up at least two rolls of film each Halloween - LOL.

Have a good one!

Love, Lauren
A very proud member of

Monday, October 08, 2007

My Tysabri Diary... Jacqueline's Story of MS...she is only 22 (the same age I was when I was diagnosed with MS), but she had a very aggressive form of MS and was becoming severely disabled.

However, she now has her life back thanks to Tysabri. Here is her story (translated from German), and the “you tube video” link below is also in German, but recovery in any form from a severe disability is easy to understand in any language...(she is the second patient on the video and you will recognize her because she is so very pretty). Enjoy! :)


Jacqueline talks ….

Jacqueline is only 22 years old, an attractive young woman from Bremen.

She walks through her apartment as if it was the most normal thing for her to do.

Nobody would have guessed that this wasn‘t possible just a few months ago, when she was feeling very badly and could hardly move.

Jacqueline Carnevale came down with a very active form of Multiple Sclerosis. Even the doctors had given up hope. “ Miss Carnevale, we cannot help you anymore” were the doctors’ estimates approximately one year ago, when the disease was at its height and no therapy was of any help.

Meanwhile Jacqueline has picked up her education again to become a specialist for job-seeking people at an employment office. Jacqueline is extremely happy that all this is possible again.

MS hits early and hard:

She was only 18 years old, had her first apartment and had just started her education at the employment agency, when she had her first MS symptoms. “I felt that my belly was numb, one half of my belly and my back”, Jacqueline recalls. Additionally there were circulation problems, and finally there was a circulation collapse when she was at home.

The next day, while in the hospital, she received the following diagnosis: “This is nothing serious, something like this can happen, it‘s only an inflammation of the spinal cord, it will stop again”. After 2 weeks in the hospital and a cortisone therapy, it seemed that this was really the case and Jacqueline went home again. But 6 months later, the same symptoms were happening all over again.

“From the computer- tomographic pictures the doctors could see that there had been 6 relapses during the last 6 months,” says Mrs. Carnevale. “Now it was obvious that this is MS”.

From here on, everything only goes down hill. One relapse is followed by the next..., in the beginning, she complained about loss of sensitivity, no balance, and then the damages increase more and more, until there is no more movement in her arms and legs.

It was taking longer and longer for her each time to recuperate from each new symptom and for her body to regenerate the normal sensations again, until in the end, there isn’t any more regeneration at all. The lowest point in her health was reached in summer 2006.

After another severe relapse, Jacqueline was brought to her mother because she couldn‘t help herself around any longer.

While others were enjoying their summer vacation, Jacqueline Carnevale had to endure her darkest hours of her young life: she is bedridden, and her mother has to bring small cut up food to her, and her mother had to pick her up for the bath tub. “ That to me was the worst part”, says Jacqueline, “ the dependency on my mother to be washed, being 21 years old!”

Yet, the things her mother did for Jacqueline, meanwhile are deeply engraved in Jacqueline. Coming with the disease, Jacqueline's relationship with her family has improved a whole lot. "I now know that my mother will always be there for me, no matter what", says Jacqueline in a very convinced tone of voice.

And then there was the turn-around:

Jacqueline’s family, and a new medication (Tysabri) were the reason for her new laughter and happiness. Until summer 2006, Jacqueline had tried all MS therapies on the market, including plasma pheresis. - Nothing helped.

Jacqueline‘s neurologist in the hospital was about to introduce chemotherapy to her when she became extremely reluctant and asked for really low doses. Her doctor must have picked up on Jacqueline‘s mood and suggested a brand new therapy, Natalizumab (Tysabri).

Jacqueline wanted it right away, but her doctor insisted that she wait at least take 24 hours to think about this new medication.

In a rehabilitation center, where she had spent a few weeks with other young MS patients, and where she had to learn how to cope with a wheelchair, Jacqueline had heard of Tysabri. The neurologist there had told Jacqueline that her disease was too advanced, and he didn‘t think that Natalizumab could be of any help in her case.

Even though some of her friends and relatives were not in favor of her taking Natalizumab, nobody could really change Jacqueline‘s mind. Not now... especially since her own neurologist suggested it to her.

She was overly excited to accept this new medication, right away. “I wanted to take that chance to get on Tysabri, no matter what. And this was the best decision I have made in my life time”. Jacqueline still says today, “from that time on, everything changed, the relapses stopped, and my body was able to help itself – it was as if I was born again!

Slowly, parts of her long lost sensations came back bit by bit, and her mobility was there again. She is no longer dependent on others, and her wheelchair no longer needs to assist her. Jacqueline once again is a young woman with dreams and hopes for her future.

She started her own MS group for MS patients age 15 to 30, she is giving interviews and has even taken part in a little MS movie. Jacqueline thinks it is very important to inform not only the MS community, but also reach out to as many people necessary in order to enhance the awareness for Multiple Sclerosis.

Her advice though for MS patients, in relation to her own therapy: “ The best thing is to go out and get as many professional opinions you can get – and then decide for yourself … “

Was this an inspirational story or what?

(((hugs to all)))

Love, Lauren
A very proud member of

Sunday, October 07, 2007

My Tysabri Diary...happy Sunday to all of you!

Here is an e-mail that I just sent off to the National Multiple Sclerosis Society...And the National Multiple Sclerosis Society is supposed to be keeping MS patients informed and up-to-date? Good grief, they irritate the hell out of me...and is Biogen or Elan doing anything about this either? Sheesh. Won't you send a quick e-mail out to them too, please?

Oh, and today I stood up for approximately 15 seconds before my knees buckled underneath me... Woooooooohooooooooo! (Albeit with my caregiver holding on to me)... I know it really doesn't sound like much to most of you, but for me, being stuck in this wheelchair since June 5, 2005... this is HUGE. Lordy, I love Tysabri (hate the physical therapy though) heehee. Have a good one guys -

Subj: NMSS Website Update Needed-Priority: High
Date: 10/7/2007 1:04:08 PM Pacific Daylight Time
From: LGLBGL2003

Dear Ms. Castor:

I hope this e-mail finds you well. I have reviewed the NMSS website regarding Natalizumab/Tysabri, and I find the data from the NMSS site woefully outdated. This data is being released through Google Alerts as of yesterday, October 6th, 2007.

Specifically, your website information located at: indicates: "At the present time, safety and efficacy of treatment with Tysabri beyond two years are not known...Last updated August 7, 2006", when in fact Three Year Safety and Efficacy data was released quite a while ago. See: "The findings from the safety update combined with the data showing the sustained effect of TYSABRI in patients treated for up to three years, contribute to our evolving understanding of the utilization of this therapy as an important treatment option for people living with the debilitating effects of MS," said Paul O'Connor, MD, St. Michael's Hospital, Toronto, Ontario, Canada, lead investigator of the TYSABRI extension study" 3 May 2007 Data Presented at the American Academy of Neurology's Annual Meeting Provide Update on Utilization and Safety of TYSABRI® in Patients with Multiple Sclerosis Additional Data From Extension Study Presented Show TYSABRI Benefit is Sustained Over Three Years

Obviously, the National Multiple Sclerosis Society is performing a terrible disservice to MS patients by providing them with only outdated information regarding Tysabri.

It would be appreciated if the NMSS would update their website immediately as to this most current Natalizumab/Tysabri information above, so that MS patients can be readily kept apprised of up-to-date information with regard to their DMD treatment options.

Respectively submitted,

Lauren Roberts

Love, Lauren :)
A very proud member of

Friday, October 05, 2007

My Tysabri Diary...13th Tysabri Infusion Report

I just got back about 20 minutes ago from my 13th infusion at the new site which is close to my home...I timed it one way, it was 8 minutes 43 seconds!
Woooohoooooo! That's a far cry from 90 minutes one way to my old infusion site.

This is a smaller Kaiser infusion center and they are much more accommodating to their patients. They are currently infusing Tysabri in three patients, with another one being added next week.

Initially, the first infusion nurse to try and get a needle in my wrist, couldn't.... so then she tried (unbeknownst to me, because my hands are numb) to try to get a needle into the top part of my hand... well, I knew when she hit bone!!! My poor right-hand looks like someone hit it with a baseball bat and is soooo bruised, owie.

After I let out a bloodcurdling scream, a new infusion nurse (which I remember from when I used to receive my Solu-Medrol treatments out there), took over and said "Lauren, don't worry, I'll find a vein, and I'll be your infusion nurse each time that you come in each month." Yaaay!

One stick, she was in, hardly felt anything at all, and after my required 30 minute Saline drip, I started receiving my liquid gold - Tysabri...aaaaaaaaaahhhhhhhhhhhh. Heehee.

I'm pretty tired right now (which usually happens to me right after my infusion), so as soon as Ray (my caregiver) comes back with pizza and mudslides (Yaaay again!), I'll probably turn in early...boring Friday night, eh?

I can hardly wait until tomorrow when I wake up and find my renewed strength... hope, it's such a wonderful feeling - oh yeeeaaah!


Love, Lauren :)
A very proud member of