Editor’s Note: Multiple Sclerosis News Today is pleased to welcome Ed Tobias to our team of Patient Specialists and Columnists. Ed brings a wealth of journalistic experience to his new column, “The MS Wire,” which explores the latest science and research news for multiple sclerosis from a patient’s perspective. Follow “The MS Wire” weekly for Ed’s engaging insights into living with MS, as well as the highlights of emerging science and medicine for the disease.
In a few weeks it will be 36 years since I was diagnosed with Multiple Sclerosis. Since this is my first blog on Multiple Sclerosis News Today, I thought it would be a good time to look at where I’ve traveled along the MS road and where I expect that road to lead.
My diagnosis came right after the 1980 Republican National Convention in Detroit. I was at the convention producing coverage for the all-news radio station in Washington, DC. The days were long and the stress was relatively high. Prior to the convention I had brushed off a couple of instances of feeling tired, when I shouldn’t have felt that way, and one brief instance of tunnel vision. (I had to talk my way out of running a red light when that happened.) When I got home, I discovered that I had trouble gripping things with my left hand. That pushed me to see a doctor.
Fortunately, at the time my wife was the Chief Physical Therapist at a hospital in Washington, D.C., and she put me in touch with its Chief of Neurology. Even with a top specialist looking me over, it took several weeks of tests — an MRI (brand new technology then), a spinal tap, an electromyograph and a nerve conduction study, and soaking in a very warm tub — to come up with my diagnosis. I was 32 years old, and my wife and I were parents of a 1-year-old son.
MS: My past and future
Maybe it was the way in which my neurologist delivered the news. Maybe it was my own personality. Whichever, once I was told that MS probably wouldn’t shorten my life, I got back to work, told my boss and my friends about my MS, and continued on. Maybe I shouldn’t have told my boss. Four months after I did that, I was fired. The broadcast news business can be like that for a manager, and I’ll never really know whether I got the boot because of my work or because of my disease. The bad news is that I was out of work for eight months. The good news is that I then went to work for The Associated Press, where I would continue for the next 31+ years.
The standard treatment for an MS exacerbation in the early 1980s was a three-day, in-hospital course of Solu-Medrol, followed by a week of tapering off that steroid using a steroid pill, Prednisone. There were no disease modifying therapies (DMTs), such as Avonex, available at the time. Over my first few years as an MS patient I could pretty much act as if nothing happened. I had a few exacerbations and, when I did, a round of Solu-Medrol would get me back on track. There was even a time when my neurologist arranged to have my IV administered in the emergency room, at 6:00 a.m., so that I didn’t have to be admitted and could continue to work after it was done.
Things changed in the 1990s when the first of the DMTs became available. My good news was that I’d been selected to be a subject in the first trial of Avonex. The bad news was that I’d have to stick myself in the thigh, once a week, with a needle that was long enough to get into the muscle. The other bad news, delivered when the study ended, was that I was in the group receiving the placebo. The other good news was that Avonex was so successful they were ending the study early, and starting me on the real stuff.
If you’re someone who’s been self-injecting a drug, you may have run into the same wall that I did. After a year or two I just couldn’t do it anymore. I had to ask my wife to jab me. Even then, after several months, a psychological barrier arose that resulted in my delaying the injections whenever I could.
Fortunately, that was about the time that Tysabri was approved for RRMS. For me, lying back in a comfortable lounger and letting an IV drip for about an hour and a half was far better than a weekly Avonex injection. Yes, I knew that there was the potential to contract PML, which could be deadly, but I trusted my neurologist and the careful monitoring, with MRIs and lab work, that she was doing. The reward outweighed the risk.
After two years of Tysabri, the period after which the likelihood of a PML infection significantly increased, I moved to Aubagio. It’s a pill, and that’s good. It’s a pill, and that’s bad. Though a daily pill is a whole lot easier than a monthly IV, the IV was covered 100 percent by insurance or Medicare and gap insurance. The pill isn’t, even though it costs a lot more, overall, to treat someone with an IV than to prescribe a pill. Go figure!
Have all of these drugs helped me? Hard to say. But I suspect I wouldn’t be as mobile as I am today without them. And I’m anxious to sample new therapies as they’re developed. As Frost wrote, “…I have miles to go before I sleep.”
That’s what this blog is all about. I’m hoping to share what I’ve learned about MS over the past three and a half decades with you, while also keeping you posted on new developments in MS research, drugs and mobility equipment.
I hope you’ll follow me here, on Wednesdays, on Multiple Sclerosis News Today and also check out some other posts on my personal blog: www.themswire.com.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this blog article are not those of Multiple Sclerosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Multiple Sclerosis.