I distinctly remember reading this article in the NY Times. My hands already hurt from what I suspected was RA yet to be diagnosed, and I felt utterly defeated. Our neighbors kids were visiting for the summer, and they were outside. I could see them out the window to the left of where I sat at my computer. I had the flash of walking upstairs to get my pistol, out into the yard (don’t make a mess inside), and killing myself. I thought that would be a rather rude thing to do to those kids so I sat glued to my chair. That was my exact thought process.
I followed the development of Betaseron after I was diagnosed in 1991, and Bob, my neurologist, was able to get me onto the protocol before it was approved by the FDA. I had been injecting that drug since somewhere in 1992, I believe, as it was finally approved in 1993. I remember arguing with my insurance company at that time about them not covering it because it wasn’t yet approved although it soon would be.
The side effects were horrific. I had a headache for over the first year I injected. I had several very bad site reactions over the years which caused open wounds on my midriff and legs and resulted in deep scarring. My butt is nonexistent from necrosis. My legs are a patchwork of discolored tissue. I could go on with gruesome descriptions, but let’s face it, these injectable drugs were never meant to be injected for this long. That just was not part of the thought process that went into their development.
That article, to me, meant that I had been injecting this drug for the past 20+ years for nothing. “Multiple Sclerosis Drug Doesn’t Prevent Onset of Disability, Study Finds.” So why exactly are we injecting it if it doesn’t do what it claimed originally to do—slow the onset of disability? I asked this question of my neurologist, and she said people really didn’t know what was going on or how it worked. Yes, I understand that; it is what they stated in the article, but the original paper said that it delayed the onset of disability which is why I started injecting it. The papers which appeared in the journal Neurology looked so promising. I read them in the hospital library as the science library at the University did not carry the journals I required.
MS is thought to be many different diseases. We have primary progressive, relapsing-remitting, etc. I don’t recall there being all those distinctions when I was diagnosed. It was just MS. I looked at it as a slope of a line with the y-axis being disability and the x-axis being time. Sure my scientific mind knew there must be a genetic component and an environmental trigger, hence my question at the Jimmy Heuga Center, but I believed that MS was the same disease, the slope of your personal line is what was different—the steeper the line, the faster the onset of disability. How can we flatten out that line, become stable, go into remission? (Because of my dealing with functional medicine since summer 2012 and watching Cordain’s talk on MS, I now realize that a lot has to do with what your diet consists of, as well.)
Betaseron was the first drug to be approved for MS. A flood of others came afterwards, but I read all the scientific papers, every single one, and none of them presented any better data. In fact most were just enough different to be approved by the FDA. Betaseron was injected subcutaneously-another intramuscularly. Betaseron was injected every other day—another every 3 days. These minor distinctions were enough for FDA approval. Yet another release, they reduced the drug dose enough so people didn’t have side effects. Great, but is it still efficacious? Who knew. In any case, I remained unimpressed by all of the therapies that came subsequently. I stuck with Betaseron.
Through my mind at this point, after reading that article, was “If I thought Betaseron was the best option, and now we’re being told, point blank, it doesn’t do what it claimed…exactly what does that mean for all the other MS therapies out there?” Because all the therapies at that point had been based on Betaseron, to me, it did not bode well.
Now we were at the point of “do you believe in what you are doing?” I can’t repeat enough the power of the mind on health and well-being. If I no longer believe in this therapy, I might as well being injecting saline. But I’ve been doing this for over 20 years. Do I know how to stop? Over the next 6 months or so I found myself “forgetting” to inject. I knew what I was doing, but I couldn’t voice it. I couldn’t even tell my partner.
I had dental surgery in June 13, 2013 and found it a convenient time to stop injecting altogether; it had been almost a year since I read that article in the NY Times. I’d been also been paleo just short of a year at that time. I read that article on July 17, 2012 and went paleo on August 1 2012. I was feeling better than I had in years; I spoke to my functional med MD about ceasing to inject. She supported the decision. I had just switched neurologists (my previous one had relocated out of the area), so I didn’t feel like going in and explaining my decision at that point.
And now it’s March 2014, and I’m remyelinating, growing new nerve pathways, repairing old ones, or however one wishes to explain the biology. I know this because I have been walking without my WalkAide which I’ve worn since May 2012. My functional medicine doc DID believe I’d have more evidence for my neurologist next time I saw her…