Muscular Sclerosis is an autoimmune disorder where the body’s immune system attacks the central nervous system, specifically the myelin, or fatty ‘insulation’ around nerves, as well as the nerves themselves. MS affects women more frequently than men, by 3 or 4:1, and the age of onset is generally 20-50 years old, but anyone can get MS at any age, and the incidence of the disease is increasing. It currently affects millions of people worldwide.
Multiple factors are associated with getting MS.
· There is a genetic link. Having a close family member with MS increases the risk.
· Growing up closer to the equator up until age 15 lowers the risk, but growing up or moving further from the equator increases the risk.
· This led researchers to discover that vitamin D status is a factor in MS.
· Smoking increases the risk of getting MS.
· Many bacteria and viruses are associated with MS, including Epstein Barr, the virus that causes mononucleosis, and human herpes virus 6. Lyme disease is also associated with MS, and may be mistaken for MS or vice versa, because of the neurological symptoms.
· Even celiac disease (a genetic autoimmune reaction to gluten) can look like MS, with sclerotic plaques in the brain and neurological symptoms.
· Loss of vision or problems with vision. It’s common to lose vision completely, though it often returns. This is often the first sign.
· Numbness or tingling.
· Difficulty walking.
· Dizziness or vertigo.
· Weakness or spasticity.
· Cognitive changes, learning or remembering new information,, or processing information may be challenging. This is the most common reason people with MS stop working.
· Fatigue. The fatigue associated with MS, like many autoimmune disorders, can be profound and debilitating.
There are different types of MS. In some cases, it may follow a milder course. In other cases, it may be quickly progressive and severe. People with MS may have good days, and not so good days. Some days they may seem fine and then be bedridden the next day. Even on good days, someone with MS may look fine, but still struggle with fatigue and any of the other symptoms.
How to Support Someone with MS
When someone you know gets a diagnosis of MS, the future can seem very scary and uncertain. It is a loss for the person with the disease and it also affects everyone close to them. Grieving is really normal and necessary for everyone affected, and includes fear, guilt, anger, denial, grief, anxiety, and a host of other emotions. These feelings can come in waves, and sometimes unexpectedly. There can also be relief at finding out the reason for the symptoms, and some hope with a treatment plan moving forward, too.
Because someone with MS can have good days and bad days, their energy level and ability to follow through on commitments can vary. This can have an impact on any relationship, but can be a challenge for friendships, and especially relationships with children. It can be a big source of disappointment for both a child and a parent with MS when plans have to be postponed or a parent misses a school performance due to illness. Understanding that plans may need to change, and being patient with yourself or your loved one is a huge help.
Figuring out what your limits are when you have a chronic illness takes some time and patience, as well as experimentation on everyone's part. Even more frustratingly, it can change sometimes without warning and you may find you've hit a wall you weren't expecting. It may be difficult for others to understand because you may not necessarily look sick. (Check out this article, which provides an excellent description for friends and family. https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/)
Joining a support group may be beneficial. Just to know that you're not alone, and to learn strategies from other people and ways they've been successful in dealing with obstacles may reduce your learning curve, either as a partner or person with MS. There are several in the greater Portland metro area. (http://www.nationalmssociety.org/Resources-Support/Find-Support/Join-a-Local-Support-Group).
Asking for help can be hard and humbling, no matter who you are, but don't be afraid to communicate how you're feeling and what your needs are. (This can be a trick in the beginning, because it may be tough to even identify where you're at, or anticipate what you might need. Be patient with yourself or your loved ones). You may find that your priorities change a little bit, and you have to pick the most important things to tackle and let some other things go. Whether you're the one with MS, or a family member, the household chores, financial burdens, and other responsibilities may have to shift significantly. Communicate with each other, and ask for outside help where you can, whether that's hiring help with simple chores like cleaning or laundry, or carpooling for the kid(s). Save your energy for the high priority stuff as much as possible, whether you're a caregiver/support person or someone living with MS.
If you're outside the immediate family circle, make yourself available for help, especially if you know someone is having a relapse or flare. Making dinner (be sure to ask about dietary requirements), taking your friend to appointments, or just providing company with no expectations when your friend is up for it all are great. Just being present and asking how your friend is feeling, listening without judgement, can be huge. While some people may or may not want to talk about the MS, everyone wants to feel heard. Just hanging out and doing normal things is incredibly important, too.
Natural Treatment Options for MS
While you'll still need a good neurologist, naturopathic medicine, chiropractic acupuncture and massage all can be of great benefit for MS. Optimizing your nutritional status, exercise to maintain function, boost mood, and decrease stress are important. There are a lot of well-researched complimentary treatments that can help with MS, as well as improving your overall health.
Other Things You Can Do