Living With MS

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

Monday, September 17, 2007

My Tysabri Diary...

I just returned from my one year follow up appointment with my neurologist, and I am pleased to report that she was "delighted" with my progress (those were her words).

What she was most happy about is that she did not feel I was progressing in my disease, and that what I thought was a mild relapse in early May of this year...was really not a relapse at all but a pseudo-exacerbation when I was so upset over Mina's death, soooooooo, no relapses in a year and no disease progression = WOOOHOOO! She also did not feel that a follow-up MRI was necessary, as she only saw good things when it came to my examination (strength, coordination, balance, etc.), and these were her findings, not my subjective opinions as relayed to her. She also said that if I wanted another MRI, she would order one, but she was trying to save me from the ordeal.

I guess because I live with this disease, and I struggle with its daily challenges, I initially did not think that she would be delighted. I am of course happy that I am able to continue with my Tysabri infusions, I just thought that she was going to be more disappointed that I hadn't made more significant improvements in my symptoms (actually I had been more disappointed than anyone, because I had only felt these minor improvements for about three weeks after my infusions - however never giving up hope and trying to maintain a positive attitude)...but not after this appointment, I'm flying!

She does want me to continue with my physical therapy exercises, and I wowed her with what I had accomplished to date (especially my improved strength). She does however want me to work on my "hip flexors" (I think that's what she called them) which enables the foot/leg to be lifted upright (aka vertically from a sitting position), and which enables one to take a step/walk. She wants my caregiver and I to be trained by the physical therapists in the exercises that will best help me in this area? We need to follow up with Kaiser in this regard.

She also said that of the Tysabri patients that she is aware of within her practice (that being in So. Calif. Kaiser), she believes that I am doing better than most of those patients. When I asked her how many patients she was talking about, she said roughly 10 to 15, but she has not asked the different neurologists throughout Kaiser, as she mainly stays focused on me as her most challenging patient - LOL.

Now I am off to do more grueling physical therapy exercises... no pain, no gain - right?

Have a great day everyone.

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

4 Comments:

  • At 8:38 AM, Blogger Sharon said…

    Who is your neurologist? I am with Kaiser in Southern California also and I have my yearly appointment coming up in October-I am sure my neuro will want me to think about Tysabri, but I don't want to do that at this point. Anyway, I am curious as to who you see with Kaiser.

     
  • At 3:15 PM, Blogger Lauren said…

    Hi there Sharon,

    Please send me an e-mail at LGLBGL2003@aol.com requesting that information.

    Take good care now, Lauren :)

     
  • At 11:01 AM, Anonymous Christine said…

    Thanks, Lauren, for giving me the hope and courage to fight on. I too need the physio exercises you discuss, and would be gratedul if you would share them with me.
    my 2nd tysabri is due 3 weeks today.. I can hardly wait.
    thanks again
    Christine (aka chris.66)

     
  • At 10:40 AM, Blogger Lauren said…

    Hi Christine!

    How's it going girl? As for my physical therapy exercises, because I've been in a wheelchair for over two years, my physical therapy exercises consist of making sure that the tendon in the back of my leg (that runs from mid thigh down to the back of my calf) stays a stretched.

    I do 10 stretching exercises per leg three times a day. What my caregiver does is raise my leg (while I'm sitting in my wheelchair) and places my foot-heel (he is in a sitting position also) on his knee and then presses my foot forward and holds it for a for a count of 10...he does this 10 times for each leg, three times a day.

    It is kind of difficult to describe these physical therapy exercises in words, but you can also "Google" physical therapy exercises for people in wheelchairs, and they should have better explanations, and possibly diagrams and/or videos of these exercises.

    Take care dearheart, and good luck with infusion number two! Yaaay!

    (((Hugs)))

    Lauren :)

     

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