Living With MS

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

Thursday, February 18, 2010

My Tysabri Diary...,

Hi everyone--
Completed my 44th Tysabri infusion on Tuesday, all went well and the infusion center I go to was training three different infusion nurses (all young'ins -20s and 30s - heehee), all Touch Certified, just being trained as a Kaiser's procedures.

Three of them wanted to sit down with me and discuss my MS, pick my brain Re: my knowledge of MS, the different ABCRs, Tysabri, all of their different efficacies, etc., etc. But the supervising infusion nurse said they had work to do, so they indicated they would look for me next month and if not too busy, sit down and talk with me. Not to brag or anything, but my own infusion nurse was beaming and seemed rather "proud" (I don't know if that is the right word) as she was taking care me and had me alter herself.

I did learn that they signed up another new Tysabri patient, and the others seem to be doing just fine on Tysabri.

I was supposed to see my neurologist yesterday for my six month checkup, but when my caregiver and I arrived, we were told that the appointment needed to be rescheduled as my doctor was called away on an emergency. While I understand that this could not be avoided, I was rather ticked off because my caregiver was actually sick and came to work anyway just so that he could bring me to my doctors appointment. Anyway, when I got back home, I rescheduled the appointment, and sent Ray home (whatever he has, I hope I don't get it--).

I'm still a little tired today, so I'll end this post for now..., take care everyone--

Love, Lauren :)


  • At 10:17 PM, Blogger lsc-blogspot said…

    Hi, Lauren,
    It's Lisa in La Honda, again. Well, I finally got my first infusion on 17 February. I feel no different than before I went in. I know it takes a while. I just hope it slows things down, and maybe, just maybe allows me to play my guitar for more than 20 minutes at a time. I was doing 2 hr gigs by myself until last summer. Now my arms and legs are so spastic, 20 minutes of playing is all I can handle.

    Thanks for being someone to look up to. You're inspiring ;^)


  • At 12:54 PM, Blogger Lauren said…

    Hi again Lisa! I'm so glad you finally got your first infusion last Wednesday. Give it a couple of weeks and perhaps keep a small daily Journal so you can keep track of any small improvements/changes you might notice-even if they are just slight improvements.

    I must tell you that most MS patients who write to me to tell me that they start actually noticing changes between the fourth and sixth infusion-but they can happen at any time if your prior damage is not permanent.

    I would not be surprised if you can start playing your guitar again for more than 20 minutes at a time in about a month or two, giving Tysabri a chance to help your body heal some of the damage left by prior relapses by blocking the majority of T cells from crossing your Blood Brain Barrier - I don't know why I'm saying this, perhaps just hoping out loud? :)

    Please keep me posted on any changes you might be feeling in the coming weeks and months..., take care Lisa & I am sending you many, many supportive hugs and prayers --

    Lauren :)


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