10 Interesting Facts From Our MS In America Survey

We recently conducted our 10th Multiple Sclerosis In America Survey, and it was completed by 4,478 people living with MS. The survey respondents shared the real, the bad, and the raw. They shared their experiences with diagnosis, treatment, symptoms, clinician relationships, mental and emotional status, and much more. Thank you to those who took the time to complete our survey!

For MultipleSclerosis.net's 10th anniversary, we wanted to share 10 insights from our 2022 survey results. We hope that in sharing these responses, we can help others who have similar experiences realize they are not alone. We also recognize that every MS journey is unique and presents its own challenges and complexities, many of which are likely not included in the points below.

10 data points from our MS survey

Our 2022 Multiple Sclerosis In America Survey respondents shared many aspects of their experience. And many of our health leader authors have written about similar experiences. Along with survey results, we have included links to their articles in case you're interested in reading more on the topic!

1. 73 percent currently see a neurologist specializing in MS (MS specialist) as part of their care team.
   "I love going to my specialist, because everyone on their team is knowledgeable when it comes to MS." – Doctors, Nurses, MRI's...Oh My! The Importance of Finding the Right Doctor for You
2. Fatigue was the top reported symptom – 87 percent of respondents are living with it.
   "We aren’t simply tired. . . . What we experience is vastly different than you being exhausted from too much work or getting too little sleep." –Driving With a Smaller Tank: MS Fatigue
3. 48 percent have experienced depression with their MS.
   "Sometimes it starts off gradually, over the course of days or even weeks, like the colors in life slowly fade away before I even realize they are fading." – "Why Are You Depressed?"
4. Almost 60 percent had a relapse in the past year.
   "These were very strange symptoms. My neuro told me it was a relapse and started me immediately on oral prednisone. " – How I Can Tell I'm Having a Relapse?
5. Only one-third are comfortable discussing their MS with family or friends.
   "I have trouble maintaining relationships (friends, family, and others) with those I knew before I was in this position." – Why I Left People Behind
6. 46 percent have an MRI every year, versus more or less often.
   "The thing about MRIs is that you never know what to expect. It could be really great news or it could be terrible news." – Praying, Hoping, Waiting: MRI Anxiety
7. Effectiveness and safety are top treatment decision factors, more so than affordability and healthcare provider's recommendation.
   "With a staggering array of choices, patients need to discuss the decision with their neurologist and do some independent research with the help of their support partners." – How to Choose an MS Medication in 3 Not-So-Easy Steps
8. 64 percent feel they have adequate information to make treatment decisions.
   "Most survey respondents wish they would have made different decisions to better manage and treat their MS" – Looking Back at Multiple Sclerosis Treatment Choices
9. 67 percent currently use disease modifying therapies (DMTs).
   "Since diagnosis, I had been on some form of DMT and typically did really well, so having to go without was not easy." – Switching DMTs: A Sometimes Necessary Hassle
10. 74 percent take vitamin D/D3.
    "Some studies show it might reduce the risk of getting MS. Others link it to a decreased risk for relapses and new brain lesions." – Vitamins, Minerals, and Supplements

Tell us about your MS experience

How do you relate to the responses above? What is your biggest challenge living with MS? What is your greatest achievement?

We'd love to hear more about you. Share your own MS story here!

The 10th Multiple Sclerosis In America Survey was conducted online from March through June 2022. The survey was completed by 4,478 people.