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 ways for patients 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 help you find the encouragement and support you need.
Check out these nine MS support groups, forums, and Facebook communities that may help you find the answers you seek.
Our very own MS community page allows you to post questions, share tips or advice, and interact with patients and caregivers 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 patients with MS or their caregivers. Click here to like our page and become a part of the Healthline MS community.
Visitors to MS Connection must create a profile in order to access the site’s many components. You’ll be asked to answer a few questions about yourself, including what your connection to MS is—are you a loved one, or have you been diagnosed? Forums are divided into very specific groups, such as “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. Family members can also be connected with a peer through the MSFriends volunteers.
MS World is run by volunteers who have MS or provided care for someone with it. MS World’s set-up is very straightforward: It hosts several forums and a continuous live chat. The forums are centered on specific questions, including topics such as “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.
Sharecare is a health and wellness site where medical experts provide answers to common medical questions. The Multiple Sclerosis Foundation (MSF) answers questions related to MS for Sharecare. If you follow MSF through Sharecare, you’ll be able to see all of the new answers they provide. You will also be able to research your own questions and receive answers from a variety of MS experts.
The Multiple Sclerosis Foundation’s Facebook group harnesses the power of an online community to help individuals with MS. The open group currently has more than 4,000 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 step in to help you find experts when needed.
The Multiple Sclerosis Association of America provides many resources for individuals 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 will be asked to give a history of your experience with MS—whether you’re a patient or a caregiver. You’ll also be asked to provide a summary of the type of help you need. Once you are 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 Voices is a Facebook community for individuals with MS. The community supports the work of MS LifeLines. MS LifeLines is a peer-matching program that connects individuals with MS to lifestyle and medical experts. These peers can point to research, lifestyle solutions, and even nutritional advice.
MS Voices and LifeLines are run by Pfizer Inc. Pfizer is the creator of the MS medicine Rebif.
Daily Strength, a support group website created by the same folks who run Sharecare, connects you with MS patients and caregivers around the world. The site is home to dozens of support groups for many conditions. The one for MS has hundreds of forum and chat topics. You can access the expert-answered questions through Sharecare and find real humans who will openly talk about their experiences with MS with you on Daily Strength.
Patients Like Me
Patients Like Me connects patients with MS and caregivers to one another. A unique component of Patients Like Me: Patients 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 patients with MS. However, the MS forum alone has over 35,000 members, and 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.
Immediately after an MS diagnosis, or even years later, you may find yourself with questions and nowhere to turn. Connecting with individuals like you through online support groups may be useful, uplifting, and even fulfilling. Many multiple sclerosis support groups, forums, and Facebook communities can help you connect with experts, patients, and caregivers alike. Together, you can encourage one another, conquer the ups and downs, and live a healthy, fulfilling life despite your diagnosis.