Living With MS

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

Wednesday, March 14, 2007


My Tysabri Diary...

I was interviewed today via a phone call by a reporter for the Stanford Daily, which she hopes will publish her article by the end of this month, MS Awareness Month. (She will send me the link when it's available for viewing online). She was very nice and very empathetic to the mis-information surrounding Tysabri. I pray her article will help patients learn the truth about Tysabri, and dispell the falsehoods circulating by "journalists" that are scaring patients needlessly.

We talked about everything from my first experience with Tysabri back in early 2005, the results I achieved at that time, the devastation of MS patients at it's voluntary removal, the safety data collected over the next excrutiating 15 months, the FDA AC hearings, our website http://www.mspatientsforchoice.org/ in our initial fight for Tysabri's return, then evolving into providing accurate info re: Tysabri, the PML issue, diminshed immunosurveillance, the combo therapy, the RiskMap, the infusion process, how upsetting it is (for me) to read the falsehoods being circulated (she had read the J. Fauber article which is scaring patients), uninformed/scared drs, the results I'm having now (which are small in comparison to my 2005 ressults), and how I will never give up spreading the word that Tysabri Equals Hope for the majority of MS patients to achieve some recovery (if not all) from their symptoms, prevent further relapses and their accumulating disabilities, and stop/slow the disease progression down until a cure for MS is found (which includes websites updating MS meds to include accurate Tysabri info, educating scared MS patients, etc..) and ultimately helping patients become their own advocates with knowledge and support as this is about our bodies, our disease, our lives on the line and it should be our choice to make a fully informed decision re: choosing the most superior and efficious DMD in over a decade to help us fight our disease with the continuing hopes of achieving an improved QoL.

I'm sure I forgot some things, but I did my best to try and spread the truth about Tysabri, that Tysabri Equals Hope.

(((hugs)))

Love, Lauren

A very proud member of http://www2.blogger.com/www.MSpatientsforchoice.org

5 Comments:

  • At 3:02 AM, Anonymous Anonymous said…

    I continue to applaud your efforts to keep the general public informed of the facts about Tysabri and MS. You have the knowledge and the facility with words to help greatly with this effort. Because you can speak from personal experience, you are a spokesperson others will listen to. Thank you for all you do. Those of us who need no convincing about Tysabri are listening too with great interest.

    Deb

     
  • At 7:50 AM, Blogger Gretchen Steele said…

    I totally agree with Deb...you do a great job and boy am I glad I met you!

     
  • At 4:13 PM, Anonymous Cyndee said…

    Lauren, you have really been busy girl!! I am so THANKFUL that you are in there fighting for us!
    It boggles my mind how much information you know and put out there about Tysabri. Out of 2 MS groups that I attend, there is still only 2 of us on Tysabri. The other doctors just won't budge! Even doctors from UCLA! What is wrong with these people! My MS pals want to get on Tysabri, but if your doctors won't put you on it what can they do? Crazy!!!

     
  • At 7:35 PM, Anonymous Anonymous said…

    Hi, Lauren:

    I was interviewed by Newsday on Wednesday as well and about the same topic. The word is getting out!!

    Elizabeth

     
  • At 9:54 PM, Blogger Brahma said…

    I just did my second dose Marc 21. As much as I tell myself not to expect any improvement I am somewhat down. I keep leaving it in God's hands. Bernie

     

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