Living With MS: It’s a Lot of Learning and Adjusting

2 min read

The best way to learn what it’s really like to live with multiple sclerosis (MS) is to hear from people who are living with the disease on a daily basis! We conducted our 10th MS In America Survey, and it was completed by more than 4,400 people living with MS. We gather information and experiences on topics including diagnosis, quality of life and relationships, symptom management, interactions with healthcare providers, treatment usage, and more.

If there’s one thing that’s clear through our survey results, it’s that people living with MS are resilient! While they are faced with a variety of obstacles related to their health and daily living, they lean on their internal strength, support systems, and healthcare team to live life to its fullest potential. It’s a lot of learning and adjusting along the way!

Using and switching DMTs

There are many decision points when it comes to MS treatment. Do I want to start a disease-modifying therapy (DMT)? Which DMT is right for me? While patients have their healthcare team to guide them in their decision, many often do their own research about treatments. Often, someone will start on a DMT and eventually switch due to preference, a change in results, or health-related issues. Our survey respondents shared their DMT experiences:

DMT use is Thirty-two percent of people oral twenty-three percent injection and forty-five percent infusion

Understanding MS symptoms

MS symptoms can significantly range in type and severity. They also often change over time. People living with MS can find themselves guessing which symptoms are related to MS or are related to something else. Survey respondents shared symptoms they didn’t realize were related to MS until they spoke with a healthcare provider or other people with MS. With more knowledge about their symptoms, they can ask better questions and seek more effective treatment!

A word cloud in the shape of a person’s brain shows the many MS symptoms people weren’t aware of when diagnosed

Managing depression and anxiety

Many who live with chronic illnesses are no strangers to depression and anxiety, including those living with MS. If you are experiencing these symptoms, please know you’re not alone. In fact, the majority of survey respondents reported they are as well. Once these feelings are identified, it’s important to talk to your doctor about them to see if medicine may be able to help. Many of our survey respondents have added prescription medicine to their treatment plan to help manage their depression and anxiety.

A person’s tears show percentage of people living with anxiety and depression and those who use prescription medicine for it

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

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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Therry Neilsen Moderator & Contributor
I really appreciate that this introductory article about the MS in America survey for 2022 mentions depression and anxiety. That was a VERY early symptom of mine, and it seemed to have a life of its own. My family is predisposed to anxiety and depression, and even with the genetic component, the degree of depression really hit me like a ton of bricks. I remember when I was first diagnosed, my doctor offered me a tricyclic antidepressant, trazodone. (SSRIs, the most common antidepressants prescribed today, weren't available until about a decade after I became depressed with MS) Frankly, the treatment was almost worse than the symptom it was trying to treat, and that held particularly true when SSRIs became avilable. i could not tolerate SSRIs. Prozac was completely horrible and Paxil was tolerable but ineffective. it wasn't until a gifted psychiatrist suggested an atypical antidepressant that drugs had any effect on my depression at all! He prescribed EFFEXOR, which selectively inhibits the reuptake of Norepinephrine as well as serotonin, and it was as if I were cured of depression. Now, naturally, your mileage may vary, but if you're having trouble finding an SSRI antidepressant that works for you, you might want to ask your prescriber if an atypical antidepressant might be right for you. Effexor had some very helpful secondary benefits as well, such limiting how much my body reacted to heat. It's sometimes prescribed for people who live with hot flashes, for example. Unfortunately, that benefit wore off as I went through menopause, but I still take the medication because of other benefits. Thanks for reading, and if you have questions, please check with your own medical professionals.
stuckey17 Member
My wife has struggled with depression. Does that count? They ask me but there are all kinds of odd feelings I may feel. But when they ask me about pain? I say "I have almost no pain" Even when I fall and bruises appear later. Probably being on a blood thinner affects that. i do not feel depressed. But got my second shingles vaccine. It did not seem to hurt much though they warned about it.
1. Lori Foster Member
 I wish your wife didn't have to deal with depression, but I am glad you are not experiencing it, <inline-mention username="stuckey17" user-id="4021187"/>. It's interesting that you feel no pain. I can imagine that must be dangerous at times, especially if you cut yourself badly or burn yourself. Is this new for you or have you felt no pain for a number of years? I am glad to hear you got your shingles vaccine. Let's hope it does its job and that you never develop shingles. Wishing you the best. - Lori (Team Member)