Learning you have MS can be overwhelming, but remember, you’re not alone. MS affects over 2.9 million people worldwide. It’s crucial to give yourself time to adjust to your diagnosis. When you’re ready, take steps to educate yourself about MS, its treatments, and the support available. It’s often helpful to connect with others affected by the disease. MS initiatives like iConquerMS can provide a sense of community, assist you in navigating your MS journey, and enable you to contribute to important MS research.
Accepting your diagnosis
Living with MS can impact many areas of your life, including your health, wellness, relationships, and career. Accepting a new diagnosis can be challenging, often accompanied by a range of emotions, making it difficult to absorb all the information provided. It’s natural to think, “Why me?” Allow yourself to feel these emotions and find ways to process them. Some people find journaling or meditation helpful. Be aware of the risk of depression, which is common with MS. If you’re concerned or feel it would be beneficial, ask your doctor to recommend a mental health professional trained in working with people with chronic conditions.
Educating yourself
There are many myths and misconceptions about MS that can make the diagnosis scarier than it needs to be. MS is rarely fatal, and people with the disease can live fulfilling lives. MS is a chronic inflammatory disease affecting the central nervous system. It occurs when the immune system causes inflammation that damages myelin (the protective insulation covering nerve fibers in the brain and spinal cord). There are four different types of MS.
When seeking information, visit reputable medical websites and MS-focused organizations, such as:
Common MS symptoms include: numbness or tingling, spasticity, vision problems, walking difficulties, weakness, fatigue, bladder dysfunction, cognitive changes, and more.
The damage to myelin or nerve fibers causes MS symptoms, which vary depending on where the damage occurs. No two people experience the same symptoms, and they may change over time. Keeping a record of your MS symptoms and how you feel can help you keep your doctor updated on how you’re doing.
Stress, lack of sleep, infections, viruses, hot baths, or anything that causes overheating can temporarily worsen MS symptoms. These triggers might lead to minor relapses and aggravate symptoms, but they do not indicate new lesions or disease progression.
Putting together a care team
Your healthcare team can discuss your condition with you, and provide valuable support and advice on managing your needs. Finding the right doctor is crucial. MS is a lifelong disease, so it’s important to be under the care of someone who suits you well. Effective communication with your healthcare team is key. Don’t hesitate to ask questions to ensure you fully understand your diagnosis, its implications, and the next steps in your treatment and management plan.
The National MS Society’s directory of providers can help you locate neurologists in your area who have expertise in treating MS.
Your healthcare team should include a neurologist and your primary care physician. Other providers may include:
Neuro-ophthalmologist, to treat vision problems related to the nervous system.
Occupational therapist, to assist with mobility at home, work or school.
Physiotherapist, to improve balance and movement.
Psychologist or mental health counselor, to treat mental health issues.
Speech and language therapist, for communication or swallowing difficulties.
Dietitian, to improve your nutrition and advice on making meals easier to swallow.
Urologist, to treat bladder problems.
Deciding on a treatment approach
Although there isn’t any treatment that can cure MS, research has improved therapies significantly. Your healthcare providers will create a personal treatment plan to manage your symptoms and slow disease progression. Early treatment is crucial to prevent permanent neurological damage.
Treatment options for MS fall into three categories:
Disease-modifying therapies can change the course of the disease.
Relapse management therapies treat MS flare-ups.
Symptomatic treatments help control common MS symptoms.
Building a support network
Living with MS can affect your mental health, leading to anxiety and depression. It may also cause feelings of loneliness and isolation, especially when symptoms interfere with daily life and social interactions. Seeking support from family, friends, and others can help alleviate these challenges. Joining an MS support group offers a sense of community and a platform to discuss symptoms and learn about management strategies.
Online support groups and community pages
The Multiple Sclerosis Association of America’s My MSAA Community.
The National MS Society’s local support group directory.
The MS International Federation offers links to many organizations that run local and online support groups.
Depression is one of the most common symptoms of MS. If you’re struggling with depression or other mood changes, ask your doctor for a referral to a mental health professional who understands the challenges you are facing with MS and can help.
Helplines
MSFriends, the National MS Society’s peer-to-peer connection program
MS Navigator, the National MS Society’s team of social workers who can answer questions, send information, and provide emotional support
Finances and insurance
Private health insurance plans may cover some or all of the cost for medical services, prescriptions, and medical supplies. Your employer may offer health insurance, or you can purchase an individual plan through companies listed on the Health Insurance Marketplace. Medicare provides coverage for a number of treatment options for MS. The U.S. Department of Veterans Affairs provides healthcare services to active service members and veterans with MS.
Nonprofit organizations that offer financial copay assistance for MS medications:
Who will you tell?
Share your diagnosis with close family and friends who can offer support, but remember, you’re not obligated to tell everyone. Choose those who will be most supportive as you adjust to living with the disease. Before telling your employer about your MS, be aware it could affect your job security and career. Learn about your rights under the Americans With Disabilities Act first.
Take charge by getting involved!
Receiving an MS diagnosis can be a lot to process, and your life may change. Although there currently is no cure, newer treatments can slow the disease’s progression, improve your quality of life, and help prevent disability. Ongoing research aims to develop even better treatments to halt progression, and even restore lost functions and abilities. iConquerMS is an 8,500-member strong community of individuals living with MS who contribute their health data, insights and experiences to advance MS research. This initiative fosters a sense of community by connecting people with MS through its online platform, where members can share experiences and support each other. If you haven’t already, join the iConquerMS community today. Connect with others that have walked a mile in your shoes, learn more about the disease and help move MS research forward!
