You Can Enjoy Life Despite Being Over 40 When Diagnosed with MS

You probably already know that multiple sclerosis (MS) is most commonly diagnosed in people in their 20s, 30s, and 40s, but can occur at any age.¹

But are you aware that there is also a rumor that’s been floating around out there for years about what we’re in for if we are older at the time of diagnosis?

Age and disease onset

When my neurologist gave me an RRMS diagnosis at age 47, I’d already been doing a bit of research, reading up on MS symptoms and treatments, as well as clinical trials, peer-reviewed articles, and patient experiences. One thing jumped out that I recited to him right after he diagnosed me: “I’ve read that the older we are at disease onset, the more we are at risk for a dramatic and rapid decline,” to which he nodded in mute agreement.

But I've discovered it is more complicated than that. Every person's experience is different. It has been at least 19 years since I was diagnosed with MS. I am now in my 60s. I have had some ups and downs, but I have learned to live with the disease.

And after many years of very little disease activity, my MS specialist and I jointly decided it would be okay to stop taking DMDs not long ago.

My changing symptoms

It is at least a year since then now, and as of my writing this, I’m doing great! I am able to work at home and enjoy my life. I am grateful for the support of my family and friends, and I am still very hopeful for the future. And believe it or not, I found some of my MS symptoms and lesions have totally resolved since those early years!

Yes, you read that correctly. Some of my MS symptoms and lesions totally resolved since 2005. In no particular order, they are:

Paleness in one retinal cup

This lesion likely formed during a 2009 relapse. Thankfully, it never affected my vision. Several years ago, my ophthalmologist discovered that the scar itself disappeared completely, leaving no trace behind!

Spastic bladder (frequent urination)

Again, this symptom appeared shortly after a 2009 relapse. I was prescribed Vesicare, which worked wonders to quiet my bladder. Years later, after quitting Vesicare on my own to see if the drug was causing my hair to thin and fall out, I discovered that my bladder spasticity didn’t worsen without it! By the way, my hair started growing back after quitting Vesicare, too! Double bonus!

Weak legs

Yet another outcome of the 2009 relapse, and why I started using a cane. But shortly after starting Ampyra (dalfampridine) in 2013, I was able to walk faster, my legs felt stronger, and my stamina improved, keeping me upright for longer periods. But I no longer need it. I am strong without the drug now.

My takeaways

As we all know, multiple sclerosis is a complicated condition that weaves itself into endless variations for each person who has it. We also know that MS-related nerve damage can cause a wider arc of decline over time.² This happened in my case as well. In my doctor’s assessment on the expanded Disability Status Scale (EDSS), I went from a 4.5 to a 5.5, largely due to my weakened legs and need for a cane. However, physical therapy has strengthened me!

The following are takeaways of my story that might give you some comfort and hope.

What I discovered

My MS-related lesions and symptoms gradually worsened over time, but also improved or disappeared completely. I think improvement can be as real a possibility as progression! Doing therapy of every stripe, from physical to psych, is key for me to fighting the effects of MS as the years go on.

I learned to take clinical study results with a big grain of salt. Especially those that conclude that a patient’s older age at disease onset all but ensures that the patient’s disease course will be much more fraught with motor dysfunction than that of their younger contemporaries. Remember that study outcomes are not the same as real-life outcomes. Studies are pursued under strict guidelines.

I am proof positive that, with a little effort, a person can try to set goals, stay physical and mentally active, and pursue joy and happiness! Consider asking your doctor if physical therapy could help you.

What's your story? Has your MS improved? Do tell!