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.