Living With MS

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

Saturday, October 04, 2008

My Tysabri Diary.....,

I had my 26th Tysabri infusion Wednesday the 1st and all went well, I was just extremely tired when I got home, and just skipped dinner that night and went to bed, and just having a light dinner Thursday night. I had my traditional pizza dinner Friday night.

The weeks prior to this infusion were more hectic for me than usual...., I changed neurologists (I really didn't want to because I had my neurologist for more than seven years), but she had a baby and was cutting back her hours, plus she was 53 miles away from me [and that's just one way], so the Kaiser neurologist near me agreed to take me on as his patient once he evaluated me...he is Touch Certified and after my appointment with him, he authorized another six months of Tysabri for me.

One miracle for me was my vision has dramatically improved to the point where I no longer have to wear my glasses when watching TV... my optic neuritis from my MS is almost completely gone. He was very happy to hear this and a big grin flashed across his face. Even though I will miss my former neurologist, I like this new doctor very much. He is very kind, caring, and really listens to the patient...he actually encourages patient dialogue with him, which I found incredible.

Then I had to go through the hassle of notifying my Tysabri Case Manager, the infusion center, making sure that the appropriate "doctor's orders" were in place, etc...., sheesh!

To make matters worse, the infusion center did not have his Tysabri orders in my file the morning of my infusion, so after I made several important and insistent phone calls, I was able to reschedule my infusion for that afternoon...,

At the end of the day, I was totally wiped out, but my infusion nurse was excited to tell me that they are getting two more Tysabri patients next month, Woooohoooo!

All my best to everyone, take care now...,


Love, Lauren :)


  • At 6:13 AM, Anonymous Anonymous said…

    I was elated to hear that your vision has imporved with the ongoing use of Tysabri. Rest up from your week of transitioning to a new neurologist and double checking all the orders for your last Wednesday infusion. I look forward to hearing of more improvements as the months move along.


  • At 5:24 PM, Blogger Denver Refashionista said…

    Glad to hear it all worked out. That's awesome about your vision.

  • At 1:16 PM, Blogger Vic said…

    Good for you, Lauren!


    PS: You can send my info as you requested in the e-mail at any time.

  • At 10:07 AM, Blogger Vic said…


    Thanks for the help.

    MS Active Source is taking a very close look at my insurance policy and what I have paid thus far for both Tysabri and infusions.

    It appears that I have been overcharged thousands and already met my deductable (months ago, regardless of what my insurance company has said).

    Your help is appreciated greatly


  • At 4:36 PM, Blogger Mikey said…

    Well, I am so happy to hear that you are doing so good on Tysabri. And get this. When I was getting my infusion on Monday, I got really tired while doing my Bible study. I laid down, and just kind of rested a bit. I thought about you!! I wondered how you were doing, and made a mental note to get on your BLOG. But before I could get to yours, you got to mine first. :-) BIG SMILES FOR YOU!!

  • At 4:53 PM, Blogger Vic said…


    I do not know who you called or what you did, but THANK YOU !!!!

    I see my neurologist on November 3 and will be back on Tysabri on November 4 !!!

    Some way or another there seems to have been a deal negotiated between Biogen, Elan, Anthem Blue Cross and the infusion center to make this all work out in a fair manner.

    Thanks again for all of your help !!!


  • At 12:21 AM, Blogger taylor1940 said…

    This comment has been removed by a blog administrator.


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