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Taking Charge of Your MS: Tips From MyMSTeam Members

Written by Daniel Bukszpan
Posted on February 1, 2021

If you’ve just received a diagnosis of multiple sclerosis (MS), you may feel several conflicting emotions at once. You may feel scared or, after a long period of experiencing mysterious symptoms you can’t explain, you may finally feel some relief.

No two people with MS are the same, and your reaction will not be the same as any other person managing the condition. Still, there's a lot to be learned from others who have walked the path you're on now. MyMSTeam members have valuable insight into what it's like to live with MS and strategies you can use to take charge of life.

Learn To Talk With Your Doctor

Talking to your doctor about MS requires that you get specific about what you’re experiencing. What does this mean for you? It means keeping track of what you're feeling when you're feeling it and reporting those symptoms accurately.

A simple and effective way of making sure your doctor is in the loop is keeping a daily symptom journal. This might be hard to remember to do at first, but stick with it. It’s more reliable than trying to remember every way your quality of life has been affected over the past months during a single doctor’s appointment.

These questions will help you track the important things to share with your doctor:

  • How long do your symptoms last?
  • On a scale of 1 to 10, how bad are they?
  • What parts of your body are affected?
  • What seems to cause symptom flare-ups?
  • How do these symptoms affect your relationships, work, and emotions?
  • Have your sleep and appetite changed?
  • What medicines or supplements are you taking?
  • Are you using recreational drugs or alcohol?

Some of these things may be hard to talk about, but successful treatment depends on your doctor having the most accurate picture of your daily life. So keep track of your symptoms and share them with your doctor.

Make Sure Your Doctor Listens Well

Many MyMSTeam members report positive relationships with their health care providers. “They are all so very nice and they explain everything to you,” one member told another when recommending a medical team. “My doctor is very knowledgeable and compassionate.”

Unfortunately, some members of MyMSTeam have struggled with doctors who don’t listen to their needs and leave questions unanswered. One member shared, “My husband and I were left with nothing but disappointment. No help with any answers, especially about my MRI.”

Depending on your circumstances, switching doctors may be the best approach. “Get a different doctor,” one member encouraged another after a bad medical experience. “Your doctor needs to listen to you and what you are going through.”

Advocate for Yourself

o better communicate with your doctor, self-advocacy — speaking up for your needs — can be the right approach. “Be your own advocate — stand up for yourself,” a MyMSTeam member told another facing difficulties with a neurologist. “You’re a vital part of your team, not just a spectator. You need to tell your neurologist that you need to try a different MS medication.”

Making informed decisions and taking responsibility for your well-being are essential aspects of self-advocacy. As one MyMSTeam member encouraged another who had questions about treatments, “Read and study MS. Being your own advocate could be important.”

Learning to advocate for your needs can take practice. One member shared, “I didn't always do well being my own advocate. Eventually I became a strong advocate for myself.”

The National Multiple Sclerosis Society offers a self-advocacy worksheet to help people with MS understand how to incorporate self-advocacy into all aspects of their lives — from medical appointments to interpersonal relationships. Suggestions include practicing describing a symptom or limitation and the desired assistance, as well as documenting interactions with employers or health insurance companies.

Advocate for Others With MS

Many members of MyMSTeam find becoming involved with MS advocacy work helps them feel a greater sense of control over MS and gives them a feeling of purpose. One member shared, “Every day I wake up and choose to advocate for myself and others like me! #MSSTRONG #MSSUPPORT #MSFIGHTER #MSSURVIVOR”

Another member shared the importance of helping others with MS. “I want to do advocacy with the National Multiple Sclerosis Society,” she wrote. “When I was newly diagnosed, no one helped me to adjust. I just did a lot of research and advocated for myself.”

There are many ways to get involved in MS advocacy, like joining a local chapter of an MS organization or writing to your government representatives about policies that would help people with MS.

Enjoy a Healthy Diet and Exercise

Eating a healthy diet and engaging in moderate exercise can be helpful when it comes to managing your MS. Unfortunately, there’s no one-size-fits-all MS diet or exercise regimen, so you’re going to have to find things that work best for you and your symptoms. Always talk to your doctor before beginning any new diet or exercise plan.

Certain foods may improve some symptoms for people with MS or help maintain general good health. These include foods rich in vitamin D, lean meats, and whole grains. The National Multiple Sclerosis Society has published a brochure on MS and nutrition. It details the best foods for people with MS and how to arrange your kitchen to make cooking easier.

Some MyMSTeam members report success with various diets, including the Wahls Protocol Diet. For others, a balanced approach to nutrition is better than a strict regimen. One member shared, “After years of working in health care and seeing loads of different diets, I firmly believe a balanced diet with your recommended fruit and veg intake and regular exercise beats any fad diet hands down.”

Another member commented, “My takeaway is not what diet is best, but what diet is best for you.”

With regard to exercise, no evidence exists to indicate that it can slow the progression of MS. However, exercise can help manage symptoms and reduce the likelihood of developing other health conditions. Not only can it improve muscle strength and respiratory function, but it can also improve one’s emotional state by boosting overall well-being and decreasing the sense of isolation.

MyMSTeam members have shared the following exercise tips:

  • “When I've dealt with fatigue, I would get myself to do exercise for just five minutes at a time. That way, if I only did five minutes I didn't feel like I'd given up, but if I was feeling good enough to do seven or eight, it was a small victory to smile about.”
  • “I started two years ago and was only able to do 20 pushups leaning forward onto kitchen units, and no other exercise in the day. I thought I was doing well then! I then started increasing slowly and made a decision to tell all of you. How could I back down?!”
  • “A good physical therapist that specializes in MS or has some distinct MS experience (Those folks tend to be rare!) can identify all sorts of things about you and suggest some great stuff.”

More Tips From MyMSTeam Members

One of the best things about belonging to MyMSTeam is that you can connect with people who understand what you’re going through. They know because they’ve been there themselves. When you say you’re experiencing this symptom or that, MyMSTeam members understand what it feels like, and they may also be aware of ways of addressing those symptoms. You can benefit from their experience.

When one MyMSTeam member reported feeling fatigued and upset, another responded with a helpful suggestion. “Hang in there and try to do small things,” the member said. “Make a list and cross things off the to-do list. This visual list will at least give you a sense of achievement. I hope you feel better soon.”

Another member said that he was having trouble managing headaches and dizziness. “Have you tried ice on the back of your neck?” a member asked him. “It helps me with my headaches.”

“My suggestion is to drink water,” another member replied. “Dehydration is a problem for us. It sets off multiple events.”

Finally, a MyMSTeam member asked the others about their experiences with managing MS symptoms. One member responded, “I rest when I can, and I don't stress out over the little things. I don't stress over things I cannot change.”

You Are Not Alone With Multiple Sclerosis

By joining MyMSTeam, the social network and online community for those living with multiple sclerosis, you gain a support group of more than 160,000 people who know what it’s like to manage MS.

Which MS symptoms do you feel interfere the most with your day-to-day life? How do you manage them? Do you have tips for others about living well with MS? Comment below or post on MyMSTeam.

Posted on February 1, 2021
All updates must be accompanied by text or a picture.

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Daniel Bukszpan is a freelance writer for MyHealthTeam. Learn more about him here

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