But in my heart I knew, I knew there was something much, much more ominous than that. I walked into the hospital that morning as a provider, but I didn’t walk back out for over a week. When I did, I left as a patient. My hospital admission was full of spinal taps, and MRI scans, IV infusions, and painful tests. When the results came back it was official: I was one of 23 million people worldwide living with multiple sclerosis. There’s no cure for MS, in fact, we don’t even really know what causes it.
There’re treatments for some types of MS but they don’t reverse damage that has already been done, they’re not guaranteed to work, and they come along with some serious, sometimes even deadly, side effects. It’s the most common neurological disease in young people, most often striking in one’s 20s or 30s when most of us are in the primes of our lives. Like a lot of 25 year olds, I was busy finishing school and starting my career, planning my wedding.
MS was not part of my 5-year plan. It’s an autoimmune disease of the brain and the spinal cord. Normally, our immune system functions keep us alive, but in the human body, the line between healthy and sick is often perilously thin. The same life sustaining immune system can turn against us and the results are disastrous. For reasons not wholly understood, in people who have MS, the immune system begins to attack our nerves.
Nerves link the brain and the spinal cord to the rest of the body, allowing them to communicate back and forth via electrical and chemical signals. Much like this wire that needs insulation in order to conduct electricity, a nerve needs insulation in order to conduct its signals. In the human body this insulation is called myelin. Now, picture this wire as the cable that goes to a television. If it were to be damaged, or cut, your nice HD picture would go away.
Well, MS is sort of the same situation. Immune cells target and destroy the myelin insulation around nerves, leaving the inner wiring of the nerve exposed. Some signals make it through, but overall, the nerve is frayed and unreliable. Over time, scar tissue forms around these damaged nerves, creating permanent lesions that we can actually see on MRI scans. Now, a damaged TV cable might give you static, but because nerves control every movement and process all sensory information in the body a damaged nerve can cause a huge variety of problems.
Symptoms can range from mild, such as numbness and tingling, to disastrous: paralysis, loss of vision. There’s no way to know where in the brain or the spinal cord MS is going to attack and no two people with MS are alike making it the sort of the whack-a-mole of diseases. A lesion could pop up in the speech center of your brain causing you to talk funny. One could jump up in your spinal cord and cause paralysis and numbness in your legs. In addition to the variety of symptoms, there’re also a few different types of MS.
In the type that I have, relapsing remitting, there’re periods of sudden attacks where new lesions form and new symptoms occur, followed by periods of relative dormancy or remission, hence relapsing-remitting. This is the most common form of MS, and the only type that’s somewhat treatable. In other forms, progressive forms, disease and disability accumulate in a linear fashion, and at this time there’re no treatments, no medications on the market that effectively slow it down.
Furthermore, patients like me who have relapsing-remitting MS can transition into progressive MS at any time, at which point, our treatment options are pretty limited. Now, I know what you’re thinking, all things considered, you look pretty good, and I do but that’s only because of the hundreds of injections I’ve given myself, the thousands of pills that I’ve swallowed, and the monthly IV infusions that I get which depress my immune system, keep my symptoms somewhat controlled, and hopefully, work to keep my relapses to a minimum.
I’m not having a relapse right now but the MS version of remission is different than you might think. Relapses can leave us permanently worse for the wear Recovery from a relapse is not guaranteed and there’s no way to know with certainty whether a loss of function is permanent or not. Even in remission, we struggle with this disease and the after effects of relapses every single day. I also look so good because a lot of the symptoms of MS are invisible.
I don’t look sick, but I have over a dozen lesions in my spine and my brain. I don’t look sick, but my legs go numb whenever I walk a short distance or face the stage of a TEDx conference. I don’t look sick, but I take antiseizure medication to deal with the overwhelming nerve pain left over from a prior relapse. I don’t look sick, but I have a cane in my closet that I pull out at days that I can’t walk on my own. I’m getting married in May, and I have to have a contingency plan for if I can’t walk myself down the aisle.