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My MS Road: Diagnosis, Disease Management & Oral Vs. Injectable Therapies


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.

Ed Tobias - MS Patient BloggerMS: 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!

What now?

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:

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. 

Diagnosed with MS at age 32 in 1980, Ed has written the “MS Wire” column for Multiple Sclerosis News Today since August 2016. He presents timely information on MS, blended with personal experiences. Before retiring from full-time work in 2012, Tobias spent more than four decades in broadcast and on-line newsrooms as a manager, reporter, and radio news anchor. He’s won several national broadcast awards. As an MS patient communicator, Ed consults with healthcare and social media companies. He’s the author of “We’re Not Drunk, We Have MS: A tool kit for people living with multiple sclerosis.” Ed and his wife split time between the Washington, D.C. suburbs and Florida’s Gulf Coast.
Diagnosed with MS at age 32 in 1980, Ed has written the “MS Wire” column for Multiple Sclerosis News Today since August 2016. He presents timely information on MS, blended with personal experiences. Before retiring from full-time work in 2012, Tobias spent more than four decades in broadcast and on-line newsrooms as a manager, reporter, and radio news anchor. He’s won several national broadcast awards. As an MS patient communicator, Ed consults with healthcare and social media companies. He’s the author of “We’re Not Drunk, We Have MS: A tool kit for people living with multiple sclerosis.” Ed and his wife split time between the Washington, D.C. suburbs and Florida’s Gulf Coast.

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  1. Thomas R. says:

    Dear Ed Tobias

    Thanks for your wonderful post and your long-term experiences with MS. I am currently at pretty much the age when you got the diagnosis and a succesful business man too! I would like to ask you a question: Looking at all current therapies for MS, would you dare to go for HSCT? It looks like the therapy coming closest to a cure but obviously comes with some risks like most dmd’s too! Thanks for your feedback and all the best to you!

    Best wishes,

    • Ed Tobias says:

      Hi Thomas,

      I’m glad that you enjoyed my post and I hope that it was useful. Treatment for any disease is a very personal choice and it’s even more so with MS, and its variety of symptoms and rates of progression.

      As you know, HSCT carries a lot of risk. After all, chemo is being used to kill off your immune cells prior to replacing them. That, to me, is much riskier than any of the DMTs that I’ve used.

      For me, that risk outweighs the possible reward. But, that might not be the case for you. I’ll be 68 years old next month and I’m enjoying retirement. I use 2 canes to walk short distances and a scooter if I want to travel more than a city block. Even if I slow down more over the next 10 or 15 years, so what? On the other hand, if I was younger and my MS was more disabling or progressing very quickly, or if DMTS weren’t helping me, I might feel differently. Still, I think, HSCT would be my treatment of last resort.

      The U.S. National Multiple Sclerosis Society has some very useful information about HSCT on its web site, which may help you as you consider what to do:

      Of course, I’m assuming you’re also discussing this subject with your neurologist.

      I’m sure that everyone reading this will be interested in what you decide and, if it’s HSCT, that you’ll keep us all posted on how it goes.

      Best regards,


  2. Thomas R. says:

    Dear Ed,

    Many thanks for sharing your very own thoughts! Certainly the treatment is a very personal choice and not really easy since the Holy Grail has not yet been found.
    In my case, the JC+ titre levels are just so incredibly high that i’m really afraid of all second line therapies. It’s to me like a consistent risk of developing the most disabling PML. Going for a harsh treatment like HSCT, which is a one-off treatment with nowadays calculatable risks, seems attractive to me. Most likely I will pursue that path… In any case it is difficult to compare the different treatment options and pros & cons. If you got Facebook, please join the HSCT main forum:
    Since you are an ambassador for MS patients, it would surely provide lots of valuable details to you too! Many thanks again for sharing the links too.

    Take care and all the best,

    • Ed Tobias says:

      Hi Catherine,

      Nope, not just you. For several years I had no problem sticking myself and then one day, bam!, I hit a brick wall. If that’s the same with you maybe it’s time to have a chat with your neuro about other options.

      Best of luck,


  3. Donna H says:

    Hello Ed,
    I am 57 and was recently diagnosed with MS after 3 1/2 years. So living with MS is very new to me. I walk each day, and do a stretching DVD, “Tai Chi for balance and mobility” by Scott Cole, which I would highly recommend. I am on Tecfidera, an oral medication, which is expensive but covered by my Health Ins. I have noticed a real improvement with my walking. Do you have any experience with this? It was very heartening to hear you keep mobile with 2 canes and a scooter. I was feeling rather defeated as I must use a cane most of time, but I guess that is a mild consideration. So far, white blood count okay, but it is very early days. Thank you for the encouraging words

    • Ed Tobias says:

      Hi Donna,

      What you’re doing is great. I’m a believer in use it or lose it and I wish I’d walked more over the years. I’ve also heard a lot of good things about Tai Chi, though I’ve never tried it. I have done yoga, but it wasn’t for me.

      I don’t have any experience with Tecfidera. It’s marketed as a Disease Modifying Therapy that’s supposed to reduce exacerbations in R&R MS. An increased walking speed isn’t listed as one of its benefits, so it’s great if that’s happening with you.

      I used Ampyra for a time. It IS marketed as a drug that improves walking speed, with tests showing an improvement of close to 25% in a timed walk in some patients. I think my speed improved while I was on it. Unfortunately, a few years after I retired my company dropped prescription coverage for retirees and I had to move to Medicare Part D for my drugs. That resulted in a very large co-pay for me and that 25% increase in my already slow speed wasn’t worth the cost.

      If you feel defeated you’re going to wind up defeated. My MS philosophy is simple: Even a pair of deuces can be a winner if you play your hand well.



  4. Magdolna Novak says:

    Dear Ed,

    thank you, thank you. We’re in the same shoes as a family: my husband got the diagnosis of RRMS last year, when our children was 8 months old. It’s so hard to believe that we can live with all the symptoms but we have to. I love him more than ever. But we’re so afraid of the symptoms coming and going. You didn’t have that fear? How did you overcome? And your wife? (especially when in solumedrol, he’s so agressive then) We’re afraid of the side effect of any SM-medication but we have to choose in weeks, and it starts… to help, we hope.
    Thank you for giving hope. Thank you for writing this. Please write more.

    • Ed Tobias says:

      Dear Magdolna,

      Thank you very much for your comment.

      Everyone who has MS deals with it in his or her own way. The same goes for our families. It’s very important to have family support. It’s also very important to have a doctor who you trust. It’s best, if it’s possible, to be treated by a doctor who specializes in neurological disorders. It’s even better to have a doctor who specializes in treating MS. I’ve been fortunate to have two, excellent MS specialists treating me for the past 36 years.

      I’d suggest that your husband follow the articles on this web site to keep informed about his disease. Of course, ask questions about what you both read. It will help the two of you to make your decisions. And, for you, I suggest that you look at This a blog written by Donna, who is married to a man with MS. Reading what she writes will help you understand that you’re not alone.

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