email i sent to my neurologist today

    • Anonymous
      October 14, 2008 at 8:19 pm

      dr. katz,

      hope all is well with you.

      so i definitely appreciate your not wanting to get too specific/practice medicine over email– i also appreciate your willingness to have email as a way for us to communicate. so thank you much for that. perhaps it’s easier for me to express in writing some thoughts i’ve been having– then we can hopefully discuss it in person…

      it seems to me that most treatment for cidp is based on a conservative approach in terms of “treatment” or “management” of this illness. a progression from less invasive to more invasive in an effort to improve quality of life, but not necessarily “cure” the illness itself.

      what i want to express and in fact impress upon you are my feelings within this spectrum of treatment. i still feel young and strongly prefer a chance at a cure rather than management. while i am aware that no cure technically exists for cidp– my understanding is that there have been some pretty good statistics in terms of remission with the use of cyclophosphamide. i would attach the journal articles but am quite sure you’ve read them…

      i’m not sure how things operate medically– meaning, it may not be “good medicine” to skip less invasive treatments– but it is my wish to do just that. with my wishes in mind, i am asking you to consider how we might proceed in this direction. is there such a thing as a medical release of liability, for example, that i can sign?

      no need to respond by email unless you care to. i see you on november 11th and we can discuss it then.

      thanks for taking the time to read this dr. katz, i know you are extremely busy.

      hope you are well.


    • Anonymous
      October 15, 2008 at 6:52 am


      Well said and I hope you follow the path you wish to follow. Aim for the best.

      Good luck

    • Anonymous
      October 15, 2008 at 9:30 am

      Hi Alice! Sounds pretty logical to me! Hope he reads your letter and gives you your wishes. Good luck Alice! Wishing you my best!

    • Anonymous
      October 15, 2008 at 3:14 pm

      Hi Alice,
      Read my post on my updated Cytoxin administration, that I am on my 16th month’s dose coming up in two weeks…I just posted an update today.
      At least I have been basically status quo, without going into respiratory distress and dieing, like two of my doctors predicted I would by this past summer.

    • Anonymous
      October 15, 2008 at 4:01 pm

      yes, keep us posted as i feel like you do….