One of the hardest parts of living with multiple sclerosis (MS) is feeling like doctors do not fully understand or appreciate the extent of your symptoms. This is especially true if they consider only your MRI results. Sadly, this experience is common. Many people living with MS have worsening symptoms even when their MRI results stay the same.
To find out more, we reached out on the MultipleSclerosis.net Facebook page. We asked community members, “Have you ever had an MRI checkup that showed no noticeable changes, however you felt as if your MS was worsening?”
Nearly 400 community members responded! Here is what they shared.
Living with multiple sclerosis (MS) means dealing with flares. Flares occur when symptoms worsen for at least 24 hours. To be considered a flare, it also must occur 30 days or more after the last attack.
We wondered what cues your body gives you about flares. We asked our community on Facebook, “How can you tell that you are experiencing an MS flare?” We got more than 250 responses, so it is clear that there are many ways flares affect you.
The day you receive a multiple sclerosis (MS) diagnosis can feel surreal. It is common to be in denial and want to ignore it. But over time, you start to see that your symptoms match what the doctor explained would happen.
For most people, there is a moment when they cannot deny their symptoms or their diagnosis anymore. And life goes on.
To find out more about what that moment looks like, we turned to the MultipleSclerosis.net Facebook page. We asked the community to fill in the blank: “You know you have MS when _____________.”
More than 250 people in the community responded. Here is what they said.
It may come as a surprise to many people that multiple sclerosis (MS) affects eyesight. But those living with MS know it can compromise parts of their vision, including depth perception.
MS affects the muscles in the body, sometimes including the muscles around the eyes. Having eye muscles that are weak or damaged can lead to complications like dizziness or vertigo. Like MS itself, these visual problems get worse with fatigue and stress.1
To find out more about the issues the MS community faces, we reached out on the MultipleSclerosis.net Facebook page. We asked, “Does patterned flooring or wallpaper ever make you feel unstable or put you into a feeling of vertigo?”
More than 200 people responded. Here is what they shared.
Learning how to live with MS takes time. Only through experience can someone learn which things in their environment trigger an MS flare. Many of these triggers can come as a total surprise.
To find out more about your experiences, we reached out on the MultipleSclerosis.net Facebook page and asked the community to fill in the blank: “I was surprised that ______ causes my multiple sclerosis to flare.”
More than 400 people responded. Here is what they shared.
Getting a multiple sclerosis (MS) diagnosis early in life can present unique challenges. Many teachers and principals are still learning how to best help students with MS. Also, young adults may not know how to act with a classmate who faces problems they do not understand. For young people with MS, this can cause a strain on their social life.
To find out more about these challenges, we asked our MultipleSclerosis.net Facebook community members: “Did or do you have MS as a kid, teen, or young adult? What was or is school and social life like?”
More than 150 people responded. Here is some of what they shared.
Visits to the doctor are part of living with multiple sclerosis (MS). Whether you go routinely or once in a while, it is an ordeal. When you get to the office, you encounter challenges. We wondered what would make the visits better.
To learn more, we turned to community members on the MultipleSclerosis.net Facebook page. There, we asked you to answer this prompt: “Fill in the blank: If I could make the doctor’s office more MS-friendly, I would ____.”
Multiple sclerosis (MS) impacts the body in many ways. Is difficult for those on the outside to understand. There are certain things only other MS warriors fully comprehend. Connecting with others living with MS feels affirming.
To learn more about these unique issues, we turned to the MultipleSclerosis.net Facebook page. We asked community members to complete this prompt: “Fill in the blank: _____ is something that only someone with MS would understand.”
One of you captured it well: “When we say, ‘I don’t feel good,’ this has an entirely different meaning.”
Are they for real?! Most multiple sclerosis (MS) commercials feel completely disconnected from your experiences of living with the condition.
We wondered how you would improve them, so we turned to MultipleSclerosis.net and asked community members to get creative! We asked our community to fill in the blank: “If you directed a commercial about MS, it would include ___.”
With more than 300 comments, they had some great ideas!