Multiple sclerosis (MS) is a chronic disease that affects the central nervous system. It causes the immune system to attack the myelin sheaths that protect nerve fibers in the brain, spinal cord and optic nerves. This damage slows down or blocks messages between the brain and body, leading to a wide range of symptoms. While there is currently no cure, treatments can help manage symptoms and slow disease progression. If you or a loved one has recently been diagnosed with MS, you likely have many questions about what life with this condition will be like. Here is an overview of some key things to expect when living with MS.
Symptoms Vary Widely
One of the most challenging aspects of MS is that symptoms are different for every person – and they can change unpredictably over time. Common symptoms include fatigue, numbness/tingling, walking/balance problems, bladder/bowel issues, vision changes, dizziness, pain, cognitive changes and emotional changes. Which symptoms you experience depends on where in the central nervous system the nerve damage occurs. Some people have mild MS with few symptoms, while others experience more aggressive disease that significantly impacts daily function. Symptoms also tend to come and go in episodic flare-ups. With such variable and unpredictable symptoms, living with MS means coping with uncertainty.
Treatment Options Are Available
While MS has no cure, treatment can make a big difference in managing symptoms and slowing progression. Disease-modifying therapies are medications that work to reduce inflammation and prevent relapses. They come in forms like oral pills, intravenous infusions and injections. Your neurologist will help determine the best disease-modifying drug for your situation. Steroids like prednisone are often used to treat acute flare-ups by reducing inflammation. Physical therapy can help improve strength, mobility and balance. Occupational therapy teaches adaptive techniques for daily activities. Regular exercise is also extremely beneficial for people with MS. Beyond medications and rehab, some people find relief using complementary therapies like massage, acupuncture, meditation and more. Having an arsenal of treatment options helps provide better control over MS.
Day-to-Day Life Can Be Challenging
Living with MS often means making lifestyle adjustments to manage fluctuating symptoms and limitations. Fatigue is one of the most common and disruptive symptoms, significantly reducing stamina for daily activities. This requires careful energy conservation and frequent rest breaks. Numbness or weakness in feet can increase fall risk, requiring use of a cane or walker for stability. Bladder problems might necessitate planning routine bathroom trips or wearing incontinence pads. Cognitive issues like memory loss or fuzzy thinking can make tasks like following recipes difficult. MS symptoms and medication side effects can also take an emotional toll, causing mood changes like depression or irritability. These kinds of daily challenges require lifestyle adaptations to find a “new normal.”
Work Life Is Manageable
Many people with MS continue working successfully, especially with some accommodations. Fatigue management might involve shifting to part-time hours, working from home or taking frequent breaks. Mobility issues could require wheelchair access, railings and elevators around the office. Cognitive symptoms may necessitate written instructions, reminders and checklists. Employers are required by the Americans with Disabilities Act to provide reasonable accommodations. Some people do eventually make the difficult decision to stop working due to MS progression. This financial impact can be mitigated with disability insurance and Social Security benefits. With some flexibility and creativity, people with MS can often find ways to remain productive employees.
Relapses May Occur
MS relapse rates vary greatly, but most people experience periodic flare-ups of old symptoms or new ones. Relapses occur when inflammation causes a new area of myelin damage. Mild relapses may involve temporary intensification of usual symptoms like fatigue or numbness. Severe relapses can produce disabling new symptoms like vision loss or paralysis. Relapses can be emotionally devastating, as they remind that MS remains active despite treatment. Most relapses resolve partially or fully within several weeks or months, especially with the help of steroids. Symptoms that remain after a relapse are called residual deficits. By understanding that ups and downs are expected with MS, it becomes easier to weather periodic flare-ups.
Support Is Critical
Living with any chronic illness is difficult without a strong support system. Make sure to surround yourself with understanding family and friends who can provide practical help as well as emotional support. Seek out local MS support groups, where you can share experiences and advice with others facing the same challenges. Online MS communities are also a great source of information and connection. Counseling may help work through the significant life adjustments required by MS. Since stress exacerbates symptoms, maintaining close relationships and using healthy coping techniques like meditation or journaling are vital. Having people to lean on makes the load feel much lighter.
Proper Diet and Lifestyle Are Important
While no specific diet has been proven to influence MS, many find that making healthy nutrition choices improves overall wellbeing. A balanced diet rich in fruits, vegetables, whole grains, lean proteins and healthy fats provides the energy and nutrients needed to function at your best. Staying hydrated with water and limiting alcohol, caffeine and sugar prevent fatigue and mood instability. Vitamin D supplements help support muscle and bone health. Other supplements like B12, omega-3 fatty acids and antioxidants may also provide benefits. Beyond diet, getting adequate sleep, exercising regularly, not smoking and managing stress are all important for your body and mind. A healthy lifestyle optimizes resilience.
Mobility Can Be a Challenge
MS causes progressive mobility impairment in many people, from mild weakness to needing a wheelchair full-time. Along the way, there are many options to maximize remaining mobility. Ankle braces provide stabilization for foot drop. Canes and walkers compensate for imbalance or fatigue. Manual and power wheelchairs preserve independence when walking becomes too challenging. Scooters allow conservation of energy for outings. Home modifications like grab bars, ramps and stair lifts also minimize fall risk and increase accessibility. Losing mobility is painful, but using assistive equipment allows focus on abilities that remain rather than what’s lost. With creativity and adaptability, you can maintain mobility at any level of MS progression.
Cognition Often Changes
Around half of those with MS experience some degree of cognitive impairment, which can be frightening. MS brain lesions interrupt pathways involved in processing speed, memory, attention, planning and other functions. Symptoms range from mild to disabling, often fluctuating day-to-day. MS cognitive changes are usually subtle, such as struggling to multitask or taking longer to learn new information. Adjusting schedules and workloads to prevent overload can help reduce issues. Establishing structured routines also minimizes mental fatigue. Various cognitive rehabilitation therapies improve or compensate for deficits. Cognition is complex, so neuropsychological testing helps identify specific vulnerable areas to target. While MS cognitive effects can be difficult, self-compassion and patience go a long way.
Emotional Health Matters
Given the many life changes MS brings, some emotional ups and downs are inevitable. It’s common to grieve the loss of pre-diagnosis abilities or expectations about the future. Anger, fear, stress and low mood occur, especially surrounding flares. Anxiety and depression are also more prevalent with MS. Make sure to monitor your moods and ask for help from your care team if needed. Counseling and medication can treat mental health issues that interfere with daily function. Peer support groups provide empathy from others facing similar struggles. Mindfulness, journaling, spiritual practices or expressive activities like art and music also smooth out emotional bumps. Prioritizing emotional wellbeing is key to quality of life with MS.
Intimacy Changes May Occur
Intimacy with partners may be affected in various ways by MS progression. Fatigue reduces sexual stamina, spasms and stiffness make movement difficult, numbness diminishes sensation and bladder/bowel issues create embarrassment. Depression, body image issues and medications also commonly lower sex drive. But while intimacy changes, it doesn’t disappear. Focusing on quality over quantity, flexibility regarding activities, careful positioning, targeted massage, and open communication with partners helps maintain a sense of connection. Explore intimacy aids if needed. Counseling provides help working through emotional barriers together. With understanding and creativity, people with MS can have fulfilling intimate relationships.
Pregnancy Is Often Possible
For many women, MS doesn’t preclude having children. Fatigue and mobility limitations pose challenges, but most pregnancies in women with MS go smoothly. Some even experience symptom relief during pregnancy thanks to suppressed immune function, especially in the 3rd trimester. However, risk of relapse returns in the first few months after birth while immune activity rebounds. Before trying to conceive, discuss medications, relapse prevention plans and delivery options with your neurologist. Allow partners to take an active role since energy must be conserved. While challenging, motherhood provides immense rewards, so women with MS often find pregnancy well worth any extra needed preparations.
Parenting Presents Demands
Parenting children while managing MS requirements brings added complexity. Fatigue makes keeping up with energetic kids tiring. Mobility restrictions limit roughhousing or participating in sports. Cognitive symptoms impede multitasking and short-term memory needed for logistics like driving to activities. Coping often requires asking children for help with tasks, alternating active days with rest days, streamlining routines and sharing caregiving with a partner or aide. Counseling helps both parent and child adjust to shifting abilities. Despite challenges, the pride and love of parenting motivates people with MS to find creative ways to be the best parents they can be.
Planning Ahead Is Crucial
To smooth out rough patches, planning life proactively is essential with MS. Maintain health insurance to ensure treatment access. Seek accommodations at work, stock up on mobility aids and modify your home before they become urgent needs. Live near family, friends and medical care as dependence on support grows. Research quality nursing facilities in case future 24/7 care becomes necessary. Consider assisted living with MS specialized services. Update legal documents like wills, health proxies and powers of attorney. Explore options to supplement income such as Social Security disability. While MS brings much uncertainty, planning ahead provides security and preparedness moving forward.
The Learning Curve Is Constant
Given shifting symptoms and evolving treatments, adapting to change becomes a way of life with MS. From using new mobility aids or medications, to modifying routines around fatigue or asking for help more often, there is always something new to learn. View this as an opportunity to cultivate adaptability and resilience. Connect with others living with MS to continually gain knowledge – no one understands the intricacies better than those experiencing them! Maintaining a curious, flexible mindset allows you to stay open to new possibilities and options. While the learning curve never ends, each lesson makes the ride a little smoother.
The Future Is Hopeful
The MS treatments pipeline has never looked more promising, giving hope for greater stability and improved quality of life ahead. Over a dozen new disease-modifying medications are in development, including more convenient oral drugs. Regenerative therapies to repair neural damage are also showing potential in trials. Thanks to tireless MS advocacy and research, medical knowledge grows exponentially each year. While MS has no current cure, progress is steady and accelerating. Even if complete symptom relief remains elusive, enhancement of function and tighter control over MS ups and downs are on the horizon. The future looks bright for maintaining productivity and pursuing your passions while managing MS.
Conclusion
Living with MS poses evolving physical, cognitive, emotional and logistical challenges. However, with treatment to slow progression, lifestyle adaptations to manage symptoms, support from loved ones, and careful planning, it is possible to live fully and pursue what matters most in life. Being proactive helps cope with uncertainty and keep MS impacts in their place. There will be hard days, but with hope, perspective and perseverance, you or your loved one can thrive on the journey with MS.