Newly Diagnosed with MS? Learn to Confront Your ‘New Normal’

If you’ve recently been diagnosed with multiple sclerosis (MS), you’re likely experiencing a range of emotions, including anger, disbelief, frustration, helplessness, depression, bewilderment, and fear. These are entirely normal reactions, and you are certainly not alone, as approximately 400,000 people in the United States, and 2.5 million worldwide, have MS. The key to adapting to your new reality – your “new normal” – and living well is to educate yourself about the disease and avail yourself of the treatment options for modifying its course and managing symptoms. MS is a chronic disease, so until a cure is found, you will have it, but you don’t have to let the disease “have” you.

Faced with an MS diagnosis, you undoubtedly have a lot of questions that need to be answered. Some of them may include the following:

What is MS?

MS is a chronic, unpredictable, noncontagious, autoimmune, inflammatory disease that affects the nervous system – including the brain, optic nerve, and spinal cord – and causes damage to the myelin sheath, the protective nerve covering. This damage eventually causes a disruption in nerve impulses, which affects the signals the brain sends to different parts of the body. The damaged or inflamed areas in the brain or spinal cord are known as lesions or plaques. The disease is not life-threatening and is not always debilitating. Indeed, MS can have vastly different effects in different people. Individuals may have one of four classifications: relapsing-remitting MS (RRMS), secondary-progressive MS, primary-progressive MS, or progressive-relapsing MS. RRMS is the most common type.

Who is Typically Affected by MS?

There is nothing you could have done to prevent MS, so don’t blame yourself. Most people who are diagnosed are between 15 and 50 years of age. Some of the risk factors include being female, living far from the equator, Caucasian ethnicity, a family history of MS, a history of smoking, certain slow-acting viral infections, and vitamin D deficiency.

What are the Symptoms of MS?

Symptoms vary and they can flare up and subside repeatedly over the course of hours, days, months, or years. It is this unpredictability that can be the most frustrating for those affected. Symptoms may include:

• Numbness/tingling
• Fatigue
• Pain
• Vision changes or loss
• Weakness
• Balance issues
• Bladder or bowel dysfunction
• Cognitive changes
• Depression or anxiety
• Dizziness/vertigo
• Muscle spasms and tremors
• Sexual dysfunction
• Speech difficulties
• Sleep issues

How is MS Diagnosed?

Currently, no single symptom, laboratory test, or physical marker can definitively determine whether an individual has MS. To confound matters, many of the symptoms are found in other conditions, which must then be ruled out, possibly causing a delay in diagnosis.

Thus far, the most reliable tests for diagnosing MS are:

• Detection of lesions in the central nervous system by an MRI scan. These scans can also be useful for assessing disease activity in the brain, optic nerves, and spinal cord and predicting the effectiveness of disease-modifying treatments.
• A spinal tap (lumbar puncture) to collect cerebrospinal fluid for analysis
• Evoked potential tests, which measure the speed with which the brain responds to visual, sound, or sensory stimulation – an indication of the level of function within the nerve pathways

Additional tools and scales may be used to measure mobility, vision, fatigue level, and other parameters.

Oddly enough, if you’ve endured weeks or months of testing; multiple doctor visits; skepticism from friends, family members, and co-workers who think you may be faking illness; or misdiagnoses, you may actually feel somewhat relieved once an MS diagnosis is confirmed. A firm diagnosis also means you can move forward to educate yourself about the disease and explore what treatments are available to manage your symptoms and limit disease progression. Just be sure to confine your research to reliable, clinically documented sources, as a lot of misinformation and outdated data is posted online.

What Treatments are Available?

At one time, physicians took a “monitor and wait” approach to MS patients. Although there is still no cure for the disease, the recommended course of treatment is much more proactive these days, and studies have shown that the earlier treatment begins, the better.

Currently, most of the long-term and disease-modifying therapies that are approved for treating MS are available only for those with the relapsing-remitting form of the disease. What is encouraging is that the specialty medications that have been developed to treat MS have proven to be both safe and effective over time, and numerous experimental drug treatments are in development. Acupuncture, dietary modifications, physical and occupational therapy, yoga, meditation, and exercise, among other therapies, have been found to be beneficial when used along with drug therapy. The aim of these treatment strategies is to:

• Help control the incidence and severity of relapses
• Limit disease progression
• Decrease the number of lesions affecting the central nervous system
• Manage symptoms
• Increase lifespan

An exhaustive review of MS therapies and research is beyond the scope of this post, but additional information is available from a variety of authoritative resources, including the Multiple Sclerosis Association of America and the local chapter of the National Multiple Sclerosis Society. As you educate yourself about MS and the treatments available, be sure to consult your physician before embarking on any new program or therapy you are considering.

How Will MS Affect My Life?

While you can’t control the fact that you have MS, it is important that you don’t allow the disease to define you or diminish your self-esteem. It may help to focus on the many areas of your life over which you can retain control, including your personal relationships, interests, attitude, work ethic, and response to problems, among others. The disease is always topmost in your mind, and it may alter how you manage the activities of daily living, but it does not change who you are, and the challenges associated with MS may make you stronger and more resilient in the long term.

One aspect of MS that may be especially troublesome is that its unpredictability can take an emotional toll on you and those closest to you. You never know how you are going to feel each day, or even each hour. Additionally, it’s a disease that is largely invisible to others. You may look the same to them, but you may be in extreme pain or feel weak or fatigued. At least until the people around you become more educated about MS, they may think you are a hypochondriac or are shirking your normal workload, and expect you to “snap out of it.” Education – yours and theirs – is the key to overcoming these misperceptions.

What Can I Do, Not Only to Survive, but to Thrive with MS?

Those who grapple with MS must develop their own strategies for dealing with the disease. Some recommendations from professionals and those affected by the disease include:

• Learn everything you can about MS and its treatment at a pace that works for you. Share your knowledge with those closest to you so they, too, can better understand your disease and support you in your journey.
• Find a team of health care providers that you trust and can confide in – they will be important allies in managing your disease.
• Keep a journal that chronicles your feelings and symptoms so that you can more accurately report your health status to your care providers. Treatment can be complex, so the more information your doctor has, the better. This activity can also be an emotional outlet for you.
• Stay as active as possible and maintain a healthy diet and lifestyle. This includes seeking help from professionals when needed.
• To the extent that you can, continue to do the things you love.
• Advocate for yourself and others with MS. Consider lending your voice and support to MS organizations that are promoting research and education.
• Maintain hope. Promising advances that may lead to a cure are being discovered every day.

CDPHP^® Can Help

Our case management professionals offer support and education for members dealing with chronic conditions like MS.

Photo by Dawn Beattie / CC BY