Life After an MS Diagnosis

A multiple sclerosis (MS) diagnosis can stir up many emotions. Fear, anger, relief, denial, and confusion are common. Each person’s experience is unique.

The team at MultipleSclerosis.net invited the community to “Share what life with MS after diagnosis really feels like.” Respondents provided their insights into life after diagnosis.

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Numbness and Tingling With MS

One common symptom of multiple sclerosis (MS) is feelings of numbness and tingling. Most often, this symptom affects the hands or feet. It makes everyday tasks more difficult. Holding a toothbrush or standing to cook is challenging when hands and feet go numb.

MultipleSclerosis.net recently shared an article on this topic. Many community members shared their experiences with these symptoms.

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Trouble Swallowing Food or Drinks

Many symptoms of multiple sclerosis (MS) are challenging to endure. For example, having difficulty swallowing is a common issue with MS. It can prevent any pleasure or comfort when eating a meal. Many people with MS report being discouraged from eating at all due to the severe pain and terror it can cause.

We reached out to the MS community to learn more. We asked, “Do you ever feel like your food gets stuck in your throat or experience other difficulties when it comes to swallowing food or drinks?”

We received 280 responses to our prompt! The MS community was moved to share their symptoms.

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MS and Sensory Overload

One overlooked symptom of multiple sclerosis (MS) is sensory overload. Noise, lights, and crowds cause panic and lead to feeling overwhelmed. Many with MS do not realize sensory overload is a symptom. It feels confusing when it first happens.

MultipleSclerosis.net published an article about sensory overload that resonated with many readers. The insights and responses from the community are worth sharing!

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Morning Pain and MS

Navigating pain is a consistent challenge with multiple sclerosis (MS). Nights are often not restful. Many with MS wake in pain. It is challenging to move first thing in the morning. 

MultipleSclerosis.net members recently engaged in a discussion about morning pain. Here are some of the insights they shared.

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Shared Experiences: Things Only Someone With MS Would Understand

Living with multiple sclerosis (MS) can feel lonely. It is hard for others to understand the spectrum of MS symptoms. Fortunately, there are communities to connect with others navigating MS! It makes the journey feel less isolating. 

MultipleSclerosis.net recently posted the following:

“Fill in the blank: ______ is something that only someone with multiple sclerosis would understand.”

This question clearly resonated, as there were over 350 responses! Among the comments, some common themes emerged.

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Fear of Falling With MS

A concern for many people with multiple sclerosis (MS) is the fear of falling. Loss of balance with this disease makes falling a common problem. But many find that slowing down, walking carefully, and learning to get up safely after a fall can be helpful.1

MulipleSclerosis.net recently published an article that highlighted some of these trials. Given the reaction it received, it clearly resonated with lots of people! Here are some of the themes that people shared in response to the article. 

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How Visual Patterns Affect People With Multiple Sclerosis

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

Illustration of woman with MS dizziness and vertigo covering face with hands and illustrative circles around her head

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.

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What Is It Like Growing Up With MS?

MultipleSclerosis.net illustration of a cartoon hand with a blue crayon coloring blue and black word balloons

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.

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Community Views: Improving the Doctor’s Office

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 ____.” 

You had some inspired ideas for changes.

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