Pondering My Age and My MS Treatment

Last updated: January 2023

As I hobbled into the infusion center for my monthly Tysabri infusion, I got all the normal greetings, jokes, questions about life, etc. When I sat down in my giant chair and rolled up my sleeve for them to get working on me, it started to dawn on me how familiar all of this has become. I’ve been going to this hospital for many years now, and I’ve been treated for MS for many more. I started to wonder, “Will it be like this forever?”

An early start with MS

I was diagnosed with MS when I was 21. I’ve now lived with MS for longer than I lived without it. During that time, I’ve relied on various disease-modifying treatments to lessen the impact of my disease. My first two treatments had limited and temporary success. This was partly because that was the best we had at the time and partially because of me.

The inexperience and bravado of my youth led me to miss doses and not always take the medication as prescribed. Sadly, I also went a stretch of time without insurance, which meant I went without these important treatments for a short, but critical, time during my life with this disease.

Treatments have evolved

During my time with MS, treatments have changed. We have more options now that are much more effective than what was available to me when I was diagnosed (unfortunately, they are not always used). Having seen the options and improvements over the years with regard to treatment, I can’t help but be amazed. While we have no cure, there have been incredible breakthroughs during my time with MS - enough to make me feel like all the MS Walks, Read-A-Thons, and various other charitable activities have made a difference. I imagine few health conditions can boast that.

Coping with my MS treatment

My current treatment, Tysabri, has done a fantastic job of slowing my progression. I’m not sure I’d be here today if I had not started it when I did. I also firmly believe that if it had been available to me sooner, I wouldn’t be disabled today. It only works if you take it though, so I no longer miss my treatments as my body has already paid the price for that. My monthly infusion has now become a regular part of my life. It has been for years at this point. Will it always be?

The future

I’ve come to terms with the fact that I will have to take some sort of MS disease-modifying treatment for the rest of my life. I also know that at some point, my current medication may no longer be enough and I’ll have to try something new. I think there are many people that might find that thought terrifying or confining - being chained to medication for the rest of their lives. That’s a bad mindset though. I feel the opposite, I look at my treatment as my great liberator. It frees me from a much more horrible life.

Getting my treatment is really a small price to pay in order to keep carrying on with life. So while it can be a pain to have to go every month and worry about getting there and how I’ll feel right afterward, that’s not too bad when you put it all into perspective. So if I have to get treatment for the rest of my life, I’m fine with that.

Thanks so much for reading and feel free to share! As always, I would love to hear about your experiences in the comments below!

Devin

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