2.5 million people around the world are living with multiple sclerosis. And most of them received a diagnosis between the ages of 20 and 40. So, what’s it like to receive a diagnosis at a young age when many people are launching careers, getting married, and starting families?
For many, the first days and weeks after an MS diagnosis isn’t just a shock to the system, but a crash course about a condition and world they barely knew existed.
Ray Walker knows this firsthand. Ray received a diagnosis of relapsing-remitting MS in 2004 at the age of 32. He also happens to be a product manager here at Healthline and has played a major role in consulting for MS Buddy, an iPhone and Android app which connects people who have MS with one another for advice, support, and more.
We sat down to chat with Ray about his experiences during those first few months following his diagnosis and why peer support is so important to anyone living with a chronic condition.
How did you first learn you had MS?
I was on the golf course when I got a call from my doctor’s office. The nurse said, “Hi Raymond, I’m calling to schedule your spinal tap.” Before that, I had just gone to the doctor because I had tingling numbness in my hands and feet for a few days. The doctor gave me the once over and I heard nothing until the spinal tap call. Scary stuff.
What were the next steps?
There’s no one test for MS. You go through a full series of tests and, if several of them are positive, your doctor may confirm a diagnosis. Because no one test says, “Yes, you have MS,” the doctors take it slow.
It probably was a few weeks before the doctor would say I had MS. I did two spinal taps, an evoked potential eye test (which measures how quickly what you see is making it to your brain), and then yearly MRIs.
Were you familiar with MS when you received your diagnosis?
I wasn’t at all. I only knew one thing, that Annette Funicello (an actress from the ’50s) had MS. I didn’t even know what MS meant. After I heard it was a possibility, I immediately started reading. Unfortunately, you only find the worst symptoms and possibilities.
What were the biggest challenges at first, and how did you deal with them?
One of the biggest challenges when I was first diagnosed was sorting through all the available information. There’s an awful lot to read for a condition like MS. You can’t predict its course, and it can’t be cured.
Did you feel like you had sufficient resources with which to deal with MS, both physically and mentally?
I didn’t really have a choice, I just had to deal. I was newly married, confused, and frankly, a little scared. At first, every ache, pain, or feeling is MS. Then, for a few years, nothing is MS. It’s an emotional roller coaster.
Who were your main sources of guidance and support during those early days?
My new wife was there for me. Books and the internet were also a major source of information. I leaned heavy on the National Multiple Sclerosis Society at the beginning.
For books, I started reading biographies about people’s journeys. I leaned to the stars at first: Richard Cohen (Meredith Vieira’s husband), Montel Williams, and David Lander were all diagnosed around that time. I was curious about how MS was affecting them and their journeys.
When you were asked to consult on the MS Buddy app, what were the features you thought were most integral for the developers to get right?
It was important to me that they fostered a mentor-type relationship. When you’re first diagnosed, you’re lost and confused. As I said earlier, there’s so much information out there, you end up drowning.
I personally would’ve loved for an MS veteran to tell me everything was going to be alright. And MS veterans have so much knowledge to share.
It’s been over ten years since your diagnosis. What motivates you to fight the MS fight?
It sounds cliché, but my kids.
What’s one thing about MS you wish other people understood?
Just because I’m weak sometimes, that doesn’t mean I also can’t be strong.
About 200 people are diagnosed with MS every week in the United States alone. Apps, forums, events, and social media groups that connect people who have MS with each other can be vital for anyone looking for answers, advice, or just someone to talk to.