The Placebo Effect

My first stem cell infusion is scheduled at the end of February.  Millions of cells will be slowly injected into my spinal fluid in what is called an intrathecal infusion.  Sound painful?  It is not.   I think.  I have been waiting a long time for his, forty years, to be precise.  Months of antibiotics and probiotics. Blood work, gamma globulin and assorted drugs have paved the way for this FDA approved experiment.            I am ready, though expectations are guarded.  I have learned not to count on anything.

Various friends have commented that my walking seems better, that I appear steadier and stronger.  The observations seem casual but sincere, coming from individuals who clearly are unaware that the stem cell therapy has not even started.  This gives me pause.

I am acutely aware of the placebo effect and know it can apply to me as well as to anyone else.  The placebo effect refers to the use of so-called sugar pills, when patients improve, though not receiving a real drug.  This means the beneficial effect in a patient following a particular treatment that arises from the patient’s expectations rather than real treatment.

Simply put, it’s all in your head, baby.

A Phase One clinical trial such as this is not randomized.  There will be no placebos.  Everyone is treated with the real thing.  But beware of the power of the mind.  Many MS patients are desperate to find the wonder drug or procedure that turns life around and makes us whole.

According to the American Cancer Society, “some patients can have the placebo effect without getting a pill, shot, or procedure. Some may just feel better from visiting the doctor or doing something else they believe will help. That type of placebo effect seems most related to the degree of confidence and faith the patient has in the doctor or activity.”

My current neurologist does inspire a level of confidence I have not known.  He has spent more time with me and given me neurological workups that clearly are more thorough than any I have had.  And he talks with me.  And listens.  My first appointment lasted two hours.  Raise your hands if you spend more than five or ten minutes with your doctor.  Okay.  Maybe fifteen.

My other neurologists have been fine physicians.  This man just is different.  My faith in the future is slowly but steadily growing.  It is not that I worry he will inject maple syrup or iced tea into my spine, but I do wonder if I am a prime candidate for the placebo effect. I so badly want to get better.

On the other hand, if I improve, who cares about why?  If it is all in my head and I walk and see better, I’ll take it.  It’s the ends not means that matter here.

 

 

 

 

 

13 Responses to The Placebo Effect

  1. Esther Vasa January 2, 2014 at 3:04 pm #

    Following your blog closely and wishing and praying for the best outcome to you and in turn to all of us MSers.

    Happy New Year!

    • Richard January 2, 2014 at 3:12 pm #

      And to you.

      Best,
      R.\

  2. Michelle Rafanelli January 3, 2014 at 8:51 am #

    Good Morning . Just wanted to let you know I get an intrathecal infusionof methotraxate from the same practice every 8 weeks. It does not hurt. Not fun but that goes without saying. Good luck with the stem cell trial. I have no doubt he and the research center will figure it out.

    • Richard January 3, 2014 at 12:22 pm #

      Thanks. I have faith in them, though nothing ever has helped, so I am trained to be skeptical. But it is great to be doing something. Anything.

      Best,
      R.

      • Michelle Clark January 9, 2014 at 11:56 am #

        I too have been on each n every medication. With brief success and a lot of side effects. I try hard being a single mom to think positive. I am in hopes there is something out there that will work with me n not against me. Good Luck Richard.

  3. Mimi January 3, 2014 at 2:14 pm #

    I have such good feelings about your trial involving stem cells. Dr. Richard Burt of Northwestern University is also conducting research using stem cell therapy on multiple sclerosis patients. I believe the NU study focuses on halting the disease as opposed to repairing myelin.

    Fingers crossed for both of these trials involving stem cells. I truly believe they are on the right track!

    • Richard January 4, 2014 at 11:17 am #

      Burt and Sadiq and I were at a Vatican adult stem cell conference in April. They certainly did disagree on approach. I am rooting for both of them. Sooner or later we are going to crack this.

      Best,
      R.

  4. Mimi January 4, 2014 at 9:33 pm #

    Burt is targeting the RRMS patients and Sadiq the PPMS and SPMS patients. Therein lies one difference between the two approaches. Sadiq still believes there is hope for patients who have crossed the line to progressive or who started off as progressive.

    You must feel a little bit like Pavlov’s dog right now. I’ll be following your journey closely.

    • Richard January 7, 2014 at 6:21 am #

      I fell doctored to death at the moment. I am grateful someone is not giving up on progressive. There are a lot of us with a stake in this. I like being a lab rat. Better than wringing my hands.

      Best,
      R.

  5. Gloria January 5, 2014 at 8:24 pm #

    My daughter was diagnosed with ms six years ago, she was 29. i met dr sadik at that time, he was not the doctor who took care of my daughter, but when, after many months of misdiagnosing by many doctors, finally dr sylvester said ” yes, she has ms” i went to the waiting area to cry and dr sadik saw me and he came by my side and talked to me for a while, i will never forget that, before he left he said ” don’t worry, she is going to be ok, and you are going to have grandchildren, he didn’t know i already had one. But yes, my daughter married and she has a daughter now. Days are not always easy but she is doing well and she is always ” doing good”.

    • Richard January 7, 2014 at 6:24 am #

      Good for your daughter. I wish her well. Sadiq is a good man. He really cares.

      Best,
      R.

  6. Kate Aquilino January 7, 2014 at 9:24 am #

    Richard,

    Wishing you all the best with the stem cell therapy.

    As much as possible, I stay away from docs and meds. Muddling Through MS – 40 years doing it my way.

    I will closely follow your journey. I hope sight comes back first!

    Kate

    • Richard January 8, 2014 at 8:31 pm #

      Me, too. This is only the beginning. Keep the faith.

      Best,
      R.