Living With MS

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

Friday, February 23, 2007




My Tysabri Diary...

Brief update from me...
I would encourage all Tysabri users to send a brief (or long) progress report to: mspatientsforchoice.org/contact.htm. This will help many MS patients looking for information about how other MS patients are doing on Tysabri therapy :)

Also, my friend, Stuart Schlossman, is running his 2nd "Un-Official Tysabri Poll" which ends on March 15, 2007. I would encourage all Tysabri users to take his poll by going to:


and copy and paste the following questions (with your answers) in the comment section.

Questions for his Tysabri Poll:

Your Name:

Your email address:

Your Location:

How long ago Diagnosed with MS?

Are you diagnosed with RRMS (Relapse Remitting)?

If not, please provide your current diagnosis:

Have you noticed a progression of your disability since being diagnosed?

If so, to what extent?

Prior to Tysabri, which MS (FDA approved) medications had you used?

In what order, in what order and for how long and with what results?

Why did you decide to switch to Tysabri?

When (in 2006/2007) did you begin taking Tysabri?

How many infusions have you now had since Tysabri re-commenced in June 2006 ?

Had you previously been on Tysabri? If so, when and for how long?

How long did it take for you to get started on Tysabri once you decided you wanted to start?

Has the infusion process gotten easier for you?

What favorable remarks do you have since beginning Tysabri Infusions?
(ie: infusion process, fatigue factors , strength, pain, walking ability, etc.)

Do you have any negative comments to inform to others?
(if yes, please explain) (ie: infusion process, side effects, etc.)

What are your expectations of Tysabri ?

What if anything have you heard from others, who are using Tysabri?

Do you have any other comments:

______end of survey

* Can I have your first born? <---laughing - I'm just kidding (wink) ... Stu will probably kill me for listing a joke question in his poll - but I did add a (*) !

*not in original survey (some parents were probably muttering to themselves, "darn it!") - lol - take care all :)

(((hugs)))
Lauren
A very proud member of www.MSpatientsforchoice.org

3 Comments:

  • At 3:11 PM, Blogger Cyndee said…

    Lauren, I tried to fill out the form and email it to your friend, but the link didn't work. Help.

     
  • At 10:10 AM, Blogger teresa said…

    Lauren,

    I also tried to send you an email but it didn't work. I was diagnosed with ms three yrs ago and I have taken Copaxone and Avonex. Now they want to put me on Tysabri and I am terrfied! Please email me and give me some words of wisdom. I'm 31 yrs old and my last MRI says that it is going to my neck now :( I'm just scared of the the warning signs. My doctors want to put me on a 5 day steriod injection this week in order to slow down the fare up I'm having, but the warning label on the Tysabri state NO STERIODS. HELP


    Thank you
    Teresa

     
  • At 1:45 PM, Blogger Lauren said…

    Michelle/Teresa,

    Check your e-mails dearheart.

    Lauren :)

     

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