Did you know that MS Awareness month is in March?
What is MS?
MS (multiple sclerosis) is an autoimmune disorder that affects the central nervous system. In MS patients, the immune system creates an enzyme that destroys the myelin (protective sheath the covers nerve fibers and axons) causing neurological damage due to lesions. Most people conjure a mental picture of people in wheelchairs when they think about MS, but that image is not accurate. In fact, only about one third of people with MS use wheelchairs twenty years after diagnosis, though some may use a cane or other mobility assistance.
The typical symptoms of MS are: extreme fatigue, balance/gait/walking problems, muscle spasms/stiffness/weakness, urinary and bowel incontinence, vision problems, tingling and/or numbness, cognitive decline (executive functioning), pain, depression, emotional changes and problems with sexual functioning. Less common symptoms include: speech and swallowing problems, seizures, hearing loss, itching, breathing problems, tremors and headache.
Who Gets MS?
Currently, the cause of MS is unknown and there is no cure. MS is 2.5 times more prevalent in women than men. However, women tend to have a better prognosis than men, possibly due to protective factors related to hormones. The age of onset is usually between 20 – 50, but due to the relapsing-remitting nature of the disease for most people, symptoms may have been present many years earlier.
About 2.5 million people worldwide have MS; 400,000 cases are reported in the US. However, there is no central registry, so that number is believed to be low. People in the most northern areas of the US are more likely to have MS. Most people with MS are Caucasian and of northern European ancestry, particularly Scottish.
Types of MS
It is important to state that every case of MS presents with different symptoms from person to person. I tell people I work with who have MS that we could line up 10 people with the disease and each would report a different experience. It is also important to know that MS is a progressive disease. Some who begin with mild symptoms may develop more severe symptoms over time, depending on the amount of demyelination he or she experiences, and the location of the lesions in the brain or spinal cord. Although there is no cure, there are disease modifying drugs that help slow down the progression of the disease by preventing new lesions which cause inflammation resulting in an exacerbation of symptoms.
Relapsing-Remitting MS (RRMS) is the most common type, affecting about 85% of people with the disease. People with this RRMS have periods of exacerbation that are believed to be caused by inflammation. During these flare-ups, they generally experience specific MS symptoms, followed by a period of remission. For some the periods of remission can be years or even decades. The symptoms during relapses may be mild, moderate or sever
One of the mystifying things about MS is that each exacerbation may present with different symptoms. For many, their first episode may be blurred or double vision (optic neuritis) that resolves within a few days or weeks. The same person may never have vision problems again, but ten years later may have numbness in his/her feet, muscle spasms, balance problems, etc. The symptoms may last a few days, weeks or months, but will usually disappear for a period of time, unless the disease progresses. The periods of remission and change in symptoms from one relapse to the next frequently make it very hard to diagnose MS.
Secondary Progressive MS (SPMS) is the second phase of the disease for some people with RRMS. It is hard to know how many people will progress from RRMS to SPMS due to the unpredictability of the disease course from person to person. For those who progress to SPMS, their symptoms no longer remit and the disease progresses more steadily, but not necessarily more quickly. The change from RRMS to SPMS is believed to be related to permanent nerve damage.
Primary Progressive MS (PPMS) is the most debilitating form of MS. About 10% of patients with MS will experience this type. With PPMS, neurologic symptoms are present from the beginning, often moderate to severe and steadily progressive. The disease modifying drugs used to slow the progression of the disease course are not effective with PPMS. Symptom management is considered the only treatment.
Progressive Relapsing MS (PRMS) is the least common type of MS in which the disease is steadily progressive but there are periods of remission. Only 5% of people with MS have this type.
Help Raise Awareness of MS and Related Mental Health Issues
The suicide rate among people with MS is higher than average. Among people who opt for assisted suicide, people with MS are over-represented. Depression related to MS can be a symptom of the disease or situational due to life changes, losses and hopelessness. Many with MS experience anxiety due to the unpredictability of the symptoms and disease, as well as life circumstances (job loss, mobility issues, etc.). Some of the disease modifying drugs also cause depression as a side effect.
About 50% of people with MS experience problems with executive functioning. This includes problems with working memory, following directions, spatial relations, impulse control, concentration/distractibility, making decisions and sequencing (similar to ADHD). These problems are very different from those of people with Alzheimer’s or dementia, as a different part of the brain is affected. However, people with MS may also have dementia or Alzheimer’s.
Treating depression in MS patients can be very difficult. Often multiple medications are required. The best outcomes for treating MS related depression are seen with a combination of medication, therapy and self help.
How You Can Help
Spread the word. Most mental health practitioners are unaware of the mental health issues related to MS.
Share this information with your colleagues.
Call your local chapter of the National MS Society, MS Foundation or MS Association of America to request information, or visit their websites for updated information.
The National MS Society offers training for clinicians.
Ask someone from these non-profits to send a speaker to your practice or organization.
Refer people with MS to local support and/or self help groups.
Advocate for MS patients with their medical providers.
Communicate with the client’s neurologist to share information for better treatment outcomes.
With your help, people with MS can have a better quality of life!
"Multiple Sclerosis." University of Maryland Medical Center. Web. 01 Apr. 2014.
"Types of MS." NMSS. National Multiple Sclerosis Society. Web. 02 Apr. 2014.