Sunday, July 5, 2009

Good Grief, My MS Is Getting Worse

My tremors are increasing, my balance is worse, and I can barely lift my right leg. I'm getting worried. I had a 3-day course of Solumedrol, but nothing improved. My neuro increased my Klonopin, but that's not helping my tremors.

I've made up my mind, after talking to people at the Infusion Center and reading posts on my MS forum, that I'm going to tell my Neuro that I want to stop Betaseron and go on Tysabri. I've heard more people say they've had improvement than not on Tysabri. I don't know if he will go along with it. If he doesn't, I'm seriously thinking about trying to find an MS specialist. I really like my neuro, but I think he and I need to get more aggressive in my treatment.

I have an appointment with him the end of this month, so we shall see how it goes. Wish me luck.


  1. Good luck with it, Tysabri is the only one I haven't tried. I'm curious about you using Montana as a walking aide, having a hard time picturing how, but very interested! Good luck to you with the neuro, hope it works out well.


    The monoclonal anti-VLA-4 antibody natalizumab mobilizes CD34+ hematopoietic progenitor cells in humans.
    Increased numbers of circulating hematopoietic stem/progenitor cells are chronically maintained in patients treated with the CD49d blocking antibody natalizumab.
    No surprise as 200X increases were seen in primates 1993
    PNAS October 15, 1993 vol. 90 no. 20 9374-9378

    Peripheralization of hemopoietic progenitors in primates treated with anti-VLA4 integrin

  3. And the latest pubmed publication from the link note the use of stem cells instead of….
    ….progenitor cells…..hmmmm,

    1: Expert Opin Biol Ther. 2009 Jul 1. [Epub ahead of print]
    The role of natalizumab in hematopoietic stem cell mobilization.

    Neumann F, Zohren F, Haas R.
    Heinrich-Heine-University, Department of Hematology, Oncology and Clinical Immunology, Duesseldorf, Moorenstr. 5, 40225 Duesseldorf, Germany +49 211 8117720 ; +49 211 8118853 ;

    The humanized monoclonal very late antigen 4 (VLA-4) antibody natalizumab is FDA approved for the treatment of patients with multiple sclerosis and Crohn's disease. In this review we focus on its role in the context of hemato-poietic stem cell transplantation and stem cell diseases. The use of natalizumab alone or in combination with either cytotoxic drugs or other antibodies might be a new modality for stem cell mobilization and a therapeutic option for patients with hematologic malignancies.

  4. for those scared about PML....more info

  5. Hi Maryann.
    Thinking of you and hoping you will find a med that will improve those tremors.