Living With MS

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

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! :)

zeitschrift_mslife_news_12_neu

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 … “

http://www.youtube.com/user/schubfrei

Was this an inspirational story or what?

(((hugs to all)))

Love, Lauren
A very proud member of www.MSpatientsforchoice.org

4 Comments:

  • At 4:29 AM, Blogger Jenborg said…

    Hi Lauren,
    Thanks for your comments on my blog. Like you, I feel very privileged to be able to receive Tysabri. I am on a Compassionate Access Scheme, because it has not yet been released in Australia at large. Just to a lucky few of us.
    I had a read of your links on your blog site (your website did not work for me) which was wonderful. I learned more about tysabri in 5 minutes, than I have the whole time - it is nice to listen, rather than read. I suppose I just follow the words of my neurologist.
    Your experiences are amazing, you seem to really care for others with the same problem. Your links have great access points.
    I did not watch your video though, I like to see a person through their writing, not how disabled they seem to be.
    The photo of you is nice! I should post a photo, but I can't work it out!
    Anyway, keep writing your blog,
    Have fun, Jen

     
  • At 10:56 AM, Blogger Lauren said…

    Hi Jen!

    And thank you for your comments on my blog :)

    I'm just so glad we both have the opportunity to be on Tysabri, and hopefully the PBS will reimburse/pick up the cost of Tysabri real soon for you and all of the MS'ers "down under" that wish to be honored as well.

    I am so glad that you found my blog and links helpful.

    You didn't need to watch my video unless you wanted to laugh your head off (LOL).

    Keep hanging in there Jen, I'll be thinking of you at my next infusion... we're all in this together, you know?

    Take care dearheart...Lauren :)

     
  • At 7:52 AM, Blogger Anne said…

    Hi Lauren:

    Haven't seen you blog for awhile. I hope you are ok,
    Anne

     
  • At 1:08 PM, Blogger Lauren said…

    Hi Anne,

    Yes, I'm okay... thank you so much for asking. I've just been a little busy out here in California lately, due to all the fires we've had. Hope you are doing well.

    I'll post again soon because I'm having my 14th Tysabri infusion on Friday, November 2nd, yaaay!

    Take care now, Lauren :)

     

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