My MS Story Chapter 14 - All in the Name of Science

(Photo credit: Wikipedia)

In early 2005 my central nervous system was under attack. My own immune system had turned on it.

The antibodies in my blood stream were treating the insulation surrounding my nerves (called myelin) as if they were an invader, a foreign body. Because our immune systems are so adept at what they do, this type of identification error is a very bad thing indeed. Imagine for a minute that you are touring the mountainous regions of Eastern Afghanistan (don’t ask me why), and a group of Special Forces soldiers mistake you for an Al-Qaeda operative. You search for your identification papers but you can’t find them. The soldiers open fire.

That’s sort of what it’s like to have an autoimmune disease. We are victims of friendly fire.

Despite having tried drugs like Novantrone, Copaxone, Methotrexate, and something called Low Dose Naltrexone, my MS continued to progress. Even though I had maintained a positive attitude in the face of challenging circumstances, and even though countless faithful friends and relatives had mentioned me in their prayers, I kept getting worse. For almost a year I had not been on any type of medical treatment. I didn’t know what else to try. The disease was running its course unchallenged. My neurologist and I were scratching our heads (and we still are today).

We had tried the drugs that were supposed to work, at least for the more common type of MS. We had tried the drugs that were rumored to work, even though there was no reliable data to support them. Next, we would look for drugs that just might work. This search introduced me to the bizarre world of clinical trials.

I describe clinical trials as bizarre because what caring doctor would ask me to submit to a treatment where I don’t even know whether I am on the trial drug or a placebo? By what authority would a researcher withhold this critical information from even my own medical team? What taker of the Hippocratic Oath would dare ask me, a patient with a chronic disease, to endure permanent damage to my central nervous system for a period of years so that this damage could be measured and compared to that of other trial participants, all in the name of furthering science? In what alternate universe might I respond positively to the trial drug, yet it could be withheld from me at the end of the trial, so that scientists could study me as I come down off the drug? What mad men devised this draconian method of sorting through which drugs work for which diseases? I want names!

The following are my recommendations for improving the drug approval system…um, well, okay, I don’t actually have any great ideas off the top of my head. But that doesn’t mean the prevailing methodology is either reasonable or compassionate. I have no doubt that one day in the future medical science will regard today’s standard clinical trial protocol in the same vein that we now regard ancient medical practices like bloodletting or blaming illnesses on angry Gods.

Eventually my neurologist and I learned of a clinical trial for primary progressive multiple sclerosis (PPMS). This is rare, as almost all the MS trials limit their enrollment to patients with the more common relapsing remitting multiple sclerosis (RRMS). The purpose of the trial was to determine whether or not a certain cancer drug, called Rituxan, could slow down or stop the progression of PPMS. Since I had no other viable options at the time, I decided to apply for acceptance into this clinical trial.

There was only one obstacle. Clinical researchers need multiple windows into the trial patient’s body in order to study how the drug affects the patient. For MS trials, one of the most common windows is Magnetic Resonance Imaging. MRI machines image the lesions that show up in our central nervous system as a result of disease activity. Having an MRI scan is not painful or uncomfortable in any way, unless you are claustrophobic.

(Photo credit: Wikipedia)

MRIs require that you to be stuffed into a “one size fits all” tube. For larger guys like me this means that your shoulders become squished inward, and the top of the tube appears only inches from the tip of your nose. There is some core part of my brain, the product of millions of years of evolution, whose function it is to never allow me to get physically stuck in a tight spot. This trait probably served my caveman ancestors very well, and is part of the reason that I am fortunate enough to exist at all. It's an irrational, base impulse. It doesn’t listen to reason. This instinct warns me “Just don't get stuck, and you may survive long enough to reproduce and pass this same wisdom on to your descendants,” or at least that’s how I imagine Darwin would explain it.

After my first couple of MRIs, way back when I was being diagnosed, I learned that whenever I got stuffed in that tube I need to take a valium first. The valium somehow suppresses my base survival instinct so that I can endure an MRI without having a panic attack.

When my doctor and I found the Rituxan trial, I obtained a list of all the hospitals in the country who were participating. Several of the hospitals were in the greater Boston area- only about two hours drive from my home. I called a special recruiting phone number at one of the hospitals and was connected with a disinterested clerk who began interviewing me. She asked what type of MS I had, how old I was, when I was diagnosed, what treatments I had tried, and so forth.

I'm an honest guy. Sometimes I should probably lie more, just to make life simpler, and the first clinical trial interview was one of those times. The questions continued…

"Mr. Sturgeon, do you have any issues with MRIs, such as claustrophobia?"

"Well, just a little bit, but it's no big deal. I'll be fine."

"Thank you for participating in this interview. Unfortunately, you are not a suitable candidate for the trial. Have a nice day.” Click.

It didn’t take a genius to figure out why my interview ended so abruptly. I went down the list until I found the name of the next hospital in the Boston area. This one was actually located in Worcester, Massachusetts. I gave them a call. I connected with a similarly impersonal clerk, and she was working from the same script. I answered all the preliminary questions, and then this one came up again.

"Mr. Sturgeon, do you have any issues with MRIs, such as claustrophobia?"

“Absolutely not.”

I was in.

For the next installment in this series, click here.