Living with MS is More Complicated Than You Think - Results from MS In America 2017
Last updated: May 2019
Multiple sclerosis is an incredibly complex condition, not only when it comes to the science behind it, but also what it means for living with it on a daily basis. We wanted to know more about life with MS, so we asked our amazing community members to share their experiences of what it is like living with this condition. For the 2017 MS In America survey, we gathered insights from 5,311 individuals who are currently living with MS. It is our goal to better understand the symptoms, management, and daily impact that MS has on those living with it, and also understand what it means for people who are caregivers living with MS.
Being misdiagnosed is more common than you think
Many people are misdiagnosed with something else before they are finally diagnosed with MS. Some of our community members were diagnosed with conditions like depression, migraine, fibromyalgia, psychiatric disorder, B-12 deficiency, or chronic fatigue syndrome before receiving a diagnosis of MS.
MS is associated with SO MANY symptoms
Fatigue, numbness & tingling, and cognitive dysfunction are all well-known MS symptoms that are experienced by the majority of our community members, but the list of symptoms goes well beyond just those.
MS pain is real
More than half of our community members who experience symptoms said they experience some sort of pain associated with their MS, and MS pain can have a significant impact on so many aspects of daily life. Pain can impact your sleep, ability to walk, recreational activities, and mood.
Troubles with treatment
While there are many more treatments available today than there were even 10 years ago, it is still challenging to find the right one for you. MS is different for everyone, so a treatment that works for one person may not work for another. Further, every treatment has risks in addition to benefits, so taking those into account can make it more complicated to make treatment-related decisions.
MS has a real impact on daily life
The impact that MS has on a person's day-to-day is broad - it can impact your ability to sleep, work, and travel. MS also impacts overall quality of life, relationships, and even sexual function.
It’s not simple
Life with MS is anything but simple. We are so grateful to all of our community members who took the time to answer our questions and participate in the 2017 MS in America Survey. There's only so much that can be learned about MS from a textbook, so hearing from real people who experience day-to-day life with MS is so important in bettering everyone's understanding of what it means to live with MS.
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