About Doctors

    • Anonymous
      October 24, 2011 at 12:59 am

      Rather than hijack Alice’s “Still Cured” thread, I will start a new one. To understand why I have started this thread, please see her post: [url]http://www.gbs-cidp.org/forums/showthread.php?t=7604[/url], post on 10/23.

      I believe that doctors, and admittedly this is a sweeping generalization, consider death as the worst sort of failure, to be avoided at every possible cost, as long as it is not immediately inevitable. If I can generalize further, if a doctor had two treatment options for a disease, s/he would consider severely disability for all to be the more successful approach than mild disability for most and death for one. I am overstating and oversimplifying the dynamics, I realize, but it is to make my belief clear.

      If my feeling is true, it might help explain the reluctance doctors have in recommending unproven treatments. If I died while undergoing an unproven treatment (and any treatment not out of Phase III clinical trial is by definition unproven), my death would be a huge failure. My being disabled in some way, while certainly disappointing, would be counted at least a partial success.

      This aversion to death is a good trait in a doctor, but might be need to be modified for chronic illnesses. After all, if we are fortunate, we face decades of a partial life. I don’t know how to effect this modification globally. Perhaps the best way is for us to discuss what success and failure means with our neurologists.

      My neurologist would not have been supportive of the various unproven methods unless I was really, [I]really [/I]bad off. Nevertheless, he and I have worked well together and have decided together on each step of the treatment. I have been willing to try things he has suggested, even when I was doubtful, with the understanding that we would try something else if it did not work. Doing so helped to establish a level of trust such that for the last four years, I have been the one calling the shots.

      In the spirit of revealing understanding doctors, my neurologist is William Parker Miller. He practices within Kaiser Permanente in the Downey (Southern California) area.


    • Anonymous
      October 24, 2011 at 4:55 pm

      My brother had multiple myeloma, a condition from which he eventually died. He was offered the opportunity for stem cell replacement, but he needed a donor for stem cells. There were three brothers and sisters, and out of the four of us we were genetically mismatches.

      Because of my autoimmune disease, I was rejected by my brother’s Dr in another State. My neurologist suggested that my brother could live with an autoimmune disease, but would die from the multiple myeloma. Eventually I was tested, but did not match anyway.

      I would have thought that my brother would risk CIDP against the ultimate price, and maybe that is why I was tested in the end.

      In either event, these are not easy decisions.

    • Anonymous
      October 24, 2011 at 5:41 pm

      I agree with you Mark, about the doctor’s definition of the feeling of success. The Mayo was satisfied to send me home after 4 months there in a power chair & no use of my hands. They had done every test imaginable on me (my hospital bill was over $200,000,) saying that after the IVIG, the PE & solumedrol, they had done all that they could do for me. They never thought “outside of the box.” I was told by a team of 6 neurologists, right before they released me, that I was refractory to all “standard” treatments & was essentially like a person who had ALS, & would die when the nerve destruction eventually reached my lungs & diaphragm.

      My husband wouldn’t give up; he eventually got me in to see Dr. Gareth Parry at the U of MN, a specialist in GBS & CIDP who literally writes the books on these two illnesses. I told him I couldn’t live in a power chair with no use of my hands, he told me that there was one thing left to try, but it was very experimenta: high-dose cytoxan infusions for one year. I said yes…

      I would find out later on that the Mayo had used this protocol on 3-4 other patiens with some success, yet they never offered it to me. It saved my life, & also gave me back the ability to walk & most of the use of my hands. That is why I prefer teaching hospitals & doctors not afraid to take risks, after all, what did I have to lose? Too many doctors ignore the quality of life factor, keep them alive at all costs. Just like my mother-in-law, who has had severe dementia since 2003, in a nursing home, yet they insisted on replacing her pace-maker a few months ago. When my husband tried to question why even do the procedure, he was treated like some kind of murderer. He has Power of Attorney (an only child,) & a signed Medical Directive, but in the end, the doctors make the choices, not us. I could go on & on…

    • Anonymous
      October 24, 2011 at 5:50 pm

      IVIG works well for me since I am able to walk again unaided. If my physician dad was still alive we’d being discussing the pros and cons of SCT. I certainly remember how he felt about issues in medicine.

      “SCT is still an experiential treatment till its effectiveness and safely can be determined.”
      That is something my dad would agree on.