My Multiple Sclerosis (MS) Story
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It all started with 2 falls down the stairs and 1 fall stepping down out of my front door in early 2005…
I had always been a graceful person with good balance. In fact, I took gymnastics as a child and spent my teen years in dance classes. I also surfed, skied and did numerous other things that require good balance very well. Because of this, my initial thoughts were not that something might be drastically wrong me with me. Instead, they leaned towards the notion that I should stop wearing the cute strappy wedge heels I had been wearing all 3 times, and of the pain I was now experiencing in my left knee.
Then, other things started to seem off to me. I started having vision issues—seeing things in my periphery that were not there, starting to feel more frequently off balance, frequent numbness for no apparent reason in my left side. I was also experiencing an increase in depression and lethargy, and had started to get migraines for the first time since my teen years. Did this drive me to the doctor to push for an explanation, no. Part of me thought it might be part of my aging process (I was 35 at the time); and, frankly, part of me was afraid to ask what was wrong.
Then came the day I was on the phone with a friend. I was just not myself and she could tell so she asked what was wrong. I began to tell her about my recent struggles. After I had told her everything, she asked me to do her a favor and go see my doctor and ask to be referred to a neurologist. After I picked my lower jaw up off the floor, I asked why. She said she didn’t want to alarm me, but that my issues sound like hers, and wants me to get checked out just in case. Our friendship was a fairly new one, so I had no idea what she has, but promised her I would make an appointment the next day.
The initial appointment wasn't bad. My primary care doctor and I discussed what had been going on and she tested my reflexes and strength and a few other things. I learned that my left side is much weaker than my right side, that my reflexes did not respond as they should in all areas, and that seeing a neurologist was recommended. I left her office feeling relieved that I wasn’t losing my mind, but worried about the neurologist visit. She declined to tell me what she suspected, and my friend was still not talking. My doctor called to make the appointment with the specialist herself to ensure I got in quickly, so there was just a week to wait.
My first neurologist visit I tend to refer to as the circus show, and I was the main act! I was asked to do things like run and walk down the hallway, hop on each foot, and do numerous things you would usually expect to see in a roadside sobriety test. I was not successful at any of them—thus leading me to realize that if I ever find myself being given a field sobriety test I am in big trouble fully sober! Though I didn’t leave this appointment with a diagnosis, I did finally have a possibility, Multiple Sclerosis. I was scheduled for an MRI and a spinal tap, and I was on my way.
MRI day arrived. I’d had one before, for my knee, and it didn’t go well. I went in feet first, but I am short and ended up almost entirely in anyway. The prospect of going in head first was horrifying, especially since I'd be in for longer! Thankfully, they are very sensitive to this and offered me sedation! This meant arriving earlier, and bringing a friend to drive me home (thanks Shannon!). At first I was very nervous, but was fine after they gave me the little white pill. I don’t recall exactly how long the MRI took, and that is FINE with me. No diagnosis yet, more to do.
This is Spinal Tap! I say that in a humorous way (and I still love that movie), but let me tell you that a spinal tap is not funny in any way! First off, just the thought of having a needle stuck in your back is not pleasant! I had to really psych myself up for this day. I was supposed to only be there a couple of hours, for the procedure and then for some observation after, but ended up being there almost all day. This was thanks to me getting what is known as a Post Dural Puncture Headache or a “spinal headache.” I was given pain killers, and then spent the rest of the day laying on my back in one of the treatment rooms. Thankfully, as promised, the headache and accompanying nausea had mostly subsided by the end of the day, but this is definitely something I never want to experience again if possible! Now I began the wait for a diagnosis.
And the diagnosis was? As suspected, Multiple Sclerosis, specifically Relapsing-Remitting MS. So many things went through my head. I felt relief that I had an answer at last (many people with suspected MS end up in a prolonged state of limbo because they cannot be definitively diagnosed for various reasons). I felt fear about what this meant for the future. And I felt so many things in between. It was time to begin some serious research! My first step was to go home and call my friend and let her know the final result. She was not too surprised. It is what she thought I have, what she has. I cannot begin to explain how wonderful it is to know someone who can walk you through EVERYTHING!
When you get a diagnosis like this there are two things you can do. Learn to cope or let it derail you. I chose the former. It is an ongoing uphill battle.
First off, there are the long term implications. The bottom line is, MS is a disease that has no real cure; and, despite the relapsing-remitting diagnosis, a large percentage of people with that diagnosis end up with progressive MS later. I choose to emphasize that, because I think it is better to accept what may happen then to “think positively” in such a way that you ignore the implications of your situation. I would rather acknowledge the fact that things connected to MS may eventually lead to my death at a younger age than without the MS, than to go through my life pretending everything is normal and ignoring reality. I have reached a point where I am mostly at peace with that.
And then there are life adjustments to make. Many things I've had to learn the hard way. When I got my diagnosis my doctor told me I should avoid high-heeled shoes from now on. I still sneak them on occasionally but it is rare and I am careful. One day I was late for work and needed to catch the next bus, so I ran. I fell, hard, and was helped up by a man likely 20 years older than I—a man who, upon first glance, the old me would have deemed far more frail than I—lesson learned, don’t run anymore! And so on. Some things are harder than others. I love to sit in the Jacuzzi, but heating up your core temperature when you have MS is bad, so I only go occasionally, when it is not a super hot Jacuzzi, and alternate between soaking and sitting on the side. Cutting stress out of my life has been one of the biggest challenges—I am a stress magnet, and this will likely be a lifelong battle...
Finally, there were treatment decisions to make. For now, I've made the choice to skip the potentially preventive medications because due to likely side effects. Steroids for a week during a flare-up are one thing, but weekly shots followed by the potential of injection site reactions and flu-like symptoms for multiple days just is not something I am willing to do without a higher rate of success.
In December of 2006, I had a flare-up. I was house-sitting for a friend, and using their car while doing so, and to make a long story short having their dogs sleeping next to my head all night led to waking with major allergy issues which lead to a major sneezing attack while driving to my place to pick some things up, which lead to my foot slipping off of the brake while coming to a stop at a red light. It was not a bad accident, but getting in an accident in a friend’s car is a stressful thing, I felt so bad! I turned around and went straight back to their place, tried to reach them, and then proceeded to melt down. The stress had my hands shaking (I was already in a high stress place due to money woes), my whole left side went numb, and my head started pounding. I called my neurologist and he asked that I meet him at the hospital right away. I had pushed myself gradually towards a flare, and the accident was the final blow. A new MRI later showed a new lesion. Not good! It was time to rethink everything.
Having a rough year made me realize I needed to change the path my life was on. My current way of life was causing me far too much stress. On top of that, I had gone through a shift with my diagnosis—one of those “life’s too short” things. The combination got me thinking, why was I living a life that was not working for me? I won’t go in to details, as there was so much thought and self-analysis involved, but the end result was leaving Los Angeles. This has turned out to be the best decision I have made in ages. My quality of life has increased an immeasurable amount, and the reduction in stress and other things have meant so much for my health, as is evidenced by the fact that I have not had a single flare-up since I left! In so many ways, I view being diagnosed with MS as one of the best things that ever happened to me.
Everyone please remember how much we need a cure for MS!