7 things to know about multiple sclerosis

Receiving a multiple sclerosis (MS) diagnosis can feel overwhelming and isolating for many. MS is a neurodegenerative disease that often involves challenging symptoms — but knowing what to expect and what resources are available can help.

Below, we’ve listed out some important aspects to keep in mind and a few resources that may be able to provide support. Read on to learn more.

What to know about multiple sclerosis

1. No two people have the same experience with MS.

There's a reason a common saying amongst patients with MS is: "If you've met one person with MS, you've met one person with MS." The condition manifests in unique ways for every person, so symptoms can vary between individuals and even change at different phases of a person’s life. The symptoms of MS are caused by damage to myelin in the brain, and the areas of damage can differ. Common symptoms include difficulties balancing, dizziness, and fatigue, but the severity and duration can be wide-ranging.

2. Finding the right treatment is an ongoing process.
Due to recent breakthroughs in medical research, several disease-modifying therapies have become available for those living with MS. While it’s good to have options, it can also be difficult to determine which treatment is best, as each has its own strengths and weaknesses. For this reason, people often have to work closely with their medical team through a series of trials and errors to determine what the best course of action will be.

3. Clinical trials can provide more potential treatment options.
Research is constantly underway to find out more information about MS, and studies for MS can't move forward without clinical trial volunteers. While it is a pervasive myth that clinical trials are only used as a last resort, there are many clinical trials available for patients throughout their MS journey. Additionally, participating in a clinical trial can have many benefits — not only are volunteers able to help make medical advancements possible, but they can also receive access to specialized care and cutting-edge treatments being tested.

4. Symptoms are likely to change over time.
As mentioned, MS symptoms are different for everyone — but one thing that most people living with MS report experiencing is a change in their disease throughout the years. The majority of people with MS are initially diagnosed with relapsing-remitting MS (RRMS), categorized by symptom flare-ups followed by periods without symptoms. Between five and 15 years after diagnosis, most RRMS patients progress to secondary-progressive MS. This stage is categorized by additional, more difficult symptoms. While progressive MS may still have periods of partial recovery, symptoms don't completely go away during these times, and tend to become steadily worse. However, it is important to note that treating MS early can help slow progression and delay the onset of secondary progressive MS.

5. Tracking symptoms can help patients and their care teams.
Because there can be so much variance between MS symptoms, keeping a daily log can be helpful for all the parties involved. Tracking things like amount and quality of sleep, exercise, diet, medication, and weather can help doctors identify patterns and make recommendations for future changes.

6. Understand complementary treatment options.
Complementary treatments are non-pharmaceutical approaches to care, such as supplements, exercise regimens and diets that are used in addition to medication. More research is needed to further understand the potential effectiveness of complementary treatments, but exercise in particular is known to help with many MS symptoms. A physical therapist can help individuals find exercises that work best for their symptoms and mobility, which can aid in reducing fatigue, improving bladder and bowel function, and improving mood.

There are many MS communities to connect with.
There are many support groups that meet in person or online that are available so patients can connect with the larger MS community. This can help with the feelings of isolation and loneliness that can accompany those living with chronic disease, in addition to sharing news about updated treatment options and advice on living life with MS. The following organizations and websites can provide resources and ways to get involved:

  • MSWorld: This volunteer-based, patient-run organization provides connection for people living with MS via chat rooms, message boards, and other patient resources.
  • Multiple Sclerosis Association of America (MSAA): In addition to educational resources for patients, MSAA also offers assistance programs for receiving items that can be supportive for those with MS.
  • National MS Society: This large nonprofit organization funds a plethora of research and education programs, such as Walk MS and Bike MS.
  • MS Focus: The Multiple Sclerosis Foundation: MS Focus is committed to providing educational resources and ways to help those with MS educate others about their condition through the MS Focus Ambassador program.

If you’d like to learn more about what clinical trials are available for individuals with MS and their caretakers, getting started is simple. Just click the button below to begin.