Each person’s journey with multiple sclerosis (MS) is very different. When a new diagnosis leaves you searching for answers, the best person to help might be another person experiencing the same thing as you.
Many organizations have created online ways for people with MS or their loved ones to seek out help from all around the globe. Some sites connect you to doctors and medical experts while others connect you to regular individuals like yourself. All can help you find encouragement and support.
Check out these eight MS support groups, forums, and Facebook communities that may help you find the answers you seek.
Living with Multiple Sclerosis
Our very own MS community page allows you to post questions, share tips or advice, and interact with people with MS and their loved ones from around the country. From time to time we post anonymous questions submitted to us by Facebook friends. You can submit your own questions and use the answers provided by the community to help you live a better life with MS.
We also share medical research and lifestyle articles that can be very useful to people with MS or their loved ones. Click here to like our page and become a part of the Healthline MS community.
Healthline’s MS Buddy
Okay, it’s not really a website, it’s an app — but MS Buddy is still a great resource! Compatible with iOS 8.0 or later (in other words, you need an iPhone, iPad, or iPod Touch), MS Buddy connects you directly with other people who have MS.
This free app asks you a few questions about yourself, like your age, location, and type of MS. It then connects you with other people who have a similar profile. If you choose, you can reach out to the users you’re matched with. It’s a great way to connect with people who get what it’s like to live with MS. Who knows — you might meet your next best friend!
Visitors to MS Connection need to create a profile in order to access many of the site’s components. Forums are divided into very specific groups, like “Newly Diagnosed” or “Living Single.” You’re encouraged to share your story and outline areas where you need the most help. These areas might include financial planning, making healthy eating choices, or discovering the latest research.
As a member of the site, you’ll also have access to a one-on-one peer connections program. With this program, you can be connected to a trained volunteer who can help you answer questions and find support. Loved ones can also be connected with a peer through the MSFriends volunteers.
MS World is run by volunteers who have MS or have provided care for someone with it. The setup is very straightforward: MS World hosts several forums and a continuous live chat. The forums are centered on specific questions, including topics like “MS Symptoms: Discussing the symptoms that are associated with MS” and “The Family Room: A place to discuss the Family Life while living with MS.”
The chat room is open for general discussion throughout the day. However, they do outline specific times of the day when it must be related to MS only.
To take part in chats and other features, you’ll likely have to register.
Multiple Sclerosis Foundation Facebook Group
The Multiple Sclerosis Foundation Facebook group harnesses the power of an online community to help people with MS. The open group currently has more than 16,000 members. The group is open for all users to post questions or offer advice, and users are able to leave comments or suggestions for everyone to see. A group of site administrators from the Multiple Sclerosis Foundation also steps in to help you find experts when needed.
The Multiple Sclerosis Association of America (MSAA) provides many resources for people with MS, including an online research library and link to financial assistance organizations. However, the site requires you to complete an application in order to become a part of their community.
When you apply, you’ll be asked to give a history of your experience with MS, whether you have the condition or are a loved one or caregiver. You’ll also be asked to provide a summary of the type of help you need.
Once you’re accepted, MSAA uses this information to help you find the best resources for your needs. They can also connect you with other members in your area or groups that might benefit you most.
MS LifeLines is a Facebook community for individuals with MS. The community supports the MS LifeLines peer-matching program, which connects individuals with MS to lifestyle and medical experts. These peers can point to research, lifestyle solutions, and even nutritional advice.
MS LifeLines is run by EMD Serono, Inc., maker of the MS medication Rebif.
Patients Like Me
Patients Like Me connects people with MS and their loved ones to one another. A unique component of Patients Like Me is that people living with MS can track their health. Through several online tools, you can monitor your health and the progression of MS. If you like, this information can be used by researchers looking to create better and more effective treatments. You can also share this information with other community members.
Patients Like Me isn’t built just for people with MS: It has features for many other conditions, too. However, the MS forum alone has over 58,000 members. These members have submitted thousands of reviews of treatments and completed hundreds of hours of research. You can read all about their experiences and use their insight to help you find the information you need.
online resources wisely
As with any information you find online, be sure to be careful with the MS resources you use. Before exploring any new treatments or stopping current ones based on advice you find online, always talk to your doctor first.
That said, these online features and forums can help you feel connected to others who know exactly what you’re going through, be they healthcare providers, loved ones, caregivers, or other people with MS. They can answer questions and offer an electronic shoulder for support.
You’ll face a range of challenges living with MS — mental, physical, and emotional — and these online resources can help you feel both informed and supported as you strive to live a healthy, fulfilling life.