Living With MS

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

Friday, January 04, 2008

My Tysabri Diary...,

This e-mail is from my friend Lynn, who is having her 60th Tysabri infusion on the 15th (Yep, you read that right, 60th Tysabri infusion)...I have her permission to post this, and the link within her e-mail from the Mountain Region Advocate Regional Trainer (She Without Arm, He Without Leg) will blow your mind. Anyone that puts limits on themselves should see this video. If you would like to read about these two dancers, scroll down a bit on the page, and their entire story is there.

By not limiting oneself as to what you can accomplish, you will be able to see yourself in a brand-new light, even though you saw yourself "crippled" at one time....You define your dreams, so be brave and dream them.

No limits limits = strength, confidence, beauty, stamina, and hope. Just trying to accomplish a task, is an accomplishment in itself, and if you don't try, you will never know what unbelievable strides and beautiful changes you can make in your life.

What a way to start the new year off! Enjoy, Lauren :)

Subj: Happy New Year!
Date: 1/2/2008 4:32:40 PM Pacific Standard Time
Sent from the Internet (Details)
Dear Lauren,

Thank you so much for your words of encouragement you give to each of us. I love reading your diary and hearing how things are going for you. I had difficulty posting a reply to your latest update so I am just sending you an email. I absolutely loved the song that you referenced by Celine. I love her music. Yes, another year has gone by, but we are still enjoying Tysabri! I go in for my 60th infusion on the 15th. And yes, I can still say that I have not had a single relapse since I began in 04/02 even despite the ups and downs of all those days. I shared with you before about all the many stressful times I had experienced, but I can now add that I have ridden on the back of a Harley Davidson motorcycle for over 200 miles too! And my precious granddaughter will be 9 months old on the 24th.

I loved the recipes you talked about for your Christmas dinner. I would love to get them sometime. And I am so happy that you got a new kitty. I loved the pictures you posted with the words of encouragement that you gave us for this New Year. I can't wait until I read about the one small step that Lauren took, a giant step for the MS community. You are going to walk some day, girl! I just know it. Attitude is such a big part of that and you are always so positive. Life is going to be great in 2008!

Thank you again for all you do and for the wonderful messages that you share with everyone. We are so blessed. I was also blessed by the inspirational ballet that was forwarded to me by the Mountain Region Advocate Regional Trainer. This is awesome. It is found at,htm.

Have a wonderful new year! I love you, Lauren.



  • At 5:00 PM, Blogger Cyndee said…


    Thanks for the encouraging cute kitty pictures! I would Love to know more about Lynn and her experiences with Tysabri. Does she have a blog or anything? 60!! Wow!

  • At 8:51 PM, Blogger ms'er faith said…


    Now that it's 2008, how much will your Tysabri cost through Kaiser? I'm in Colorado, but they just increased copays for ALL injectables and infusables, from $20 per month, to 20% (much larger)! I'm thinking this is nationwide, but do you know if you're affected, especially since you're with Medicare?

    Thanks, Beth (or "Faith")

  • At 7:58 AM, Blogger Lauren said…

    Hiya Cyndee!

    To my knowledge no, Lynn does not have a blog. If you want to get to contact her, please send me an e-mail and I'll put you in touch with her, okey-dokey artichokey?

    Lauren :)

  • At 8:13 AM, Blogger Lauren said…

    Hi there Beth :)

    Here in Southern California, Kaiser Permanente is a participating Medicare HMO provider. Therefore, because I am on Medicare, I don't pay anything for Tysabri, not even the infusion. I just have to have them done within the Kaiser network.

    I am due for my 17th Tysabri infusion on January 23rd, so we'll see if I am charged anything at all, but I doubt it (at least I hope I won't be charged anything) because Medicare covers Tysabri (the drug 100% under Part D), or the infusion (as an outpatient procedure 80% under Part B).

    Beth, do you have Kaiser Permanente as well in Colorado? If so, you might want to contact their Member Services Department in order to discuss this with them because a co-pay of 20% sux!

    Let me know, okay dearheart?


  • At 2:17 PM, Blogger ms'er faith said…

    Hi again Lauren,

    I'm sure about the 20%--it was a benefit change put in place for 2008 for pretty much all Kaiser members in CO (doesn't sound like Medicare is included though, but I'm not on Medicare). So a lot of people are stopping therapy because then it's too expensive with the 20% copay. I guess I'm lucky because I'll find a way to make it work (you know, once I start the drug after seeing my doc in Jan), but so many people will stop medicines or not start them and I'm thinking that will not be good for them. Thanks for your explanation--I'm going to check into that in CO not for me, but for others. Hope your infusion goes well.

  • At 3:50 AM, OpenID SaharaRN said…

    Hello, my name is Sara and I just stumbled across your blog while reading more info about Tysabri. I had my first infusion on December 20 and became very ill by December 27 and am still fighting a variety of issues. Thanks for all the info you provide, it's appreciated. Have you come across any info or sites that address reactions or illness, etc, after starting Tysabri (or people who have hit an early bump in the road like I have)? I'm on my 2nd course of antibiotics for multiple infections and am now struggling with nausea, headache, and stiff neck/spine, started anti-nausea meds yeseterday. I don't have a very informed or active neurologist and haven't even been able to see or talk to him yet so am only dealing with my GP at this point. Very frustrating! I see a lot of praise for the drug and that is understandable, but I have only one dose to compare to so far and am afraid of more. Sorry to write so much, thanks for your time.
    Sara ( if anyone would like to write)


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