it's time to rethink multiple sclerosis

Live with
boldness

Dear all,
My name is Laura Mann, I am 24 and I have had MS for two years. I would like to say I have overcome this hideous disease and am the boss of my own body -- but I have not. When I was initially diagnosed, I was working full-time, had a highly active social active life, and a wonderful home.

Within four months though, I was unable to work because of the crushing fatigue that made it impossible to get past the tremendous pain in my legs. Because of this, I was forced to move back in with my parents because I could no longer maintain a household by myself. The past few months, all of my energy has centered around trying to work with what is still left of my body. My physical therapist helps me immensely with reducing the pain in my legs and gaining balance and coordination because I get very dizzy from both the MS, and, the pain medications I take for my legs.

I also had to reshape my group of friends because they were incapable of dealing with my disease. My new friends are now all solid, wonderful, supportive people who help me with the mental and emotional aspects of the illness.

Thankfully, I can still: walk, run, and stand, but all at great cost. But even standing for just 10 minutes can result in tremendous discomfort. Some days are almost pain free and bearable. But some days I am in bed crying because the pain medications I take do not numb the pain enough.

What makes MS such a difficult decease is that everyone has different symptoms and responds differently to pain medication. Some people can walk fine but are incredibly dizzy. And in the worst case (with progressive MS) some people first cannot walk, then can not use their arms, then ultimately lose their eyesight. So I understand it could be much worse for me. But, it is still very hard battling fatigue and pain each and every single day of my life. I remain hopeful that going forward I can live a wonderful and fulfilling life with MS. As I see it, giving up and giving into the pain that comes with this disease is not an option.

The
Truth

about multiple sclerosis is a complicated one

Physically, it attacks the cells of a person's immune system that support the ability of nerves in the central nervous system to communicate with each other. The insulation of the "wires" in your brain is called Myelin. This is what, for unclear reasons, is attacked and destroyed by inflammatory cells which should be targeting infections foreign to the body.

This damage happens in a patchwork manner of neurological deficits including: difficulties with vision, movement, sensation, and even mood. Since your brain coordinates how the body works, all of this important functionality can be irreparably damaged by MS.

The disease is often a progressive one, meaning, your prognosis gets progressively worse over time. But it also follows a waxing and waning course which means some of the functions lost in a flare-up can return. Although there are "prototypical" MS patients, doctors might be more suspicious of the possibility of MS in some patients (women in their 30's from northern Europe is the classical example). The truth is that this insidious disease can strike anyone at any age.

MS can vary in severity. It can begin as a mild variant in which there is no significant physical disability. Then, after decades, it can bring on new injuries which lead to disabilities and sometimes death due to medical complications. The good news about MS is that while doctors don't know what causes it, they do have treatments which both alleviate symptoms and, more importantly, can modify the course of the disease slowing the onset of more severe symptoms. Unlike many things we face in medicine, something can be done about Multiple Sclerosis to make the lives of our patients better over the long term. With effective treatments that suppress the very immune response that are the root of the problem ---there is hope.

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