I was introduced to Multiple Sclerosis many years ago when my aunt was diagnosed with the disease. I was too young to fully appreciate the significance of her diagnosis, but I remember feeling the sadness among adult family members as we walked tirelessly through the rain in an effort to raise money for Multiple Sclerosis research. Unbeknownst to me, I was helping to raise money and awareness for a disease I would one day acquire.
The disease remained at arm’s length for most of my life; I was only reminded of its ferociousness at family gatherings when I witnessed my aunt’s decline in health. As the family grew older, there was less opportunity for family reunions and Multiple Sclerosis became like the crazy classmate you lost touch with after elementary school; you know he is out there, but there isn’t much effort to be reunited. Well, unfortunately, Multiple Sclerosis sought me out, knocked on my door, and informed me he was moving in… forever. Since I cannot kick him out, I have had to get to know him. Here is just a little information I have learned about Multiple Sclerosis.
The medical term “Multiple Sclerosis” is a fancy way of saying, “many scars.” The scars are formed on the brain and/or spinal cord by a confused immune system that mistakenly identifies the myelin sheath, the protective covering of nerve fibers in the central nervous system (CNS), as a foreign invader. The immune system attacks the myelin sheath, damages it, and leaves behind many scars. Unfortunately, this process does not usually occur once but numerous times throughout one’s life, causing extensive damage to the CNS. With the messaging system damaged, an individual experiences a litany of lifelong symptoms, some easily noticed while others remain hidden from onlookers (cognitive problems, imbalance, difficulty walking, spasticity, burning, tingling, facial pain, vertigo, incontinence, fatigue, bladder problems, depression, sexual problems, etc.). The symptoms one experiences are individualized, no two persons have the exact same symptoms, though there is usually some overlap.
Still the disease that affects an estimated 400,000 Americans and over 2.3 million people worldwide remains, to a large extent, mysterious. Yes, it has a name, and its actions after onset are well documented, but research has yet to fully uncover its cause. There is believed to be a genetic link, but “bad” genes do not guarantee one will get the disease. There seems to be an environmental aspect to the onset of the disease as well, genetics cock the hammer while an environmental factor pulls the trigger. It’s quite cruel actually, for it places at least part of the blame on those suffering. If only they hadn’t enjoyed a certain food or hadn’t chosen to live at a certain place, perhaps Multiple Sclerosis wouldn’t have found them, some wonder in pain. Unfortunately , all the pondering and second guessing does little good, because there are no do-overs; at this point, it is a chronic disease that one can only hope to contain.
Thanks be to God, there are numerous medications available that help contain the disease if it is diagnosed and treated early. Everything from injections, pills, and infusions has been created by pharmaceutical companies to help slow the progression of the disease by lengthening the span between attacks. There are also some promising regenerative medications (Anti-lingo, still in clinical trials) that may help the body repair the damage already done to the CNS. While twenty years ago, Multiple Sclerosis was nearly certain to send one into a wheelchair; now, it is only a possible consequence of the disease.
So, how is Multiple Sclerosis treating me? For a chronic disease, I suppose okay. After moving in on March 4, 2014 I have struggled to keep the disruptive roommate locked up and in the basement. I am still searching for my drug of choice to contain the disease, but I have hope that Rituximab, the strongest and most effective medication available, will do the trick (first infusion scheduled 6.8.15, rescheduled 6.19.15). If Rituximab fails me, I will look to have HSCT performed (Dr. Burt, Northwestern) which has shown early signs of halting the disease long-term in some people. I have numerous hidden symptoms (don’t worry, I will spare you for now), but as of today my brain has been largely spared which allows me to function at a relatively high level. Yet I Trust.