There’s no “good” way to start this. There’s no “right” way to lay it all out for you where it will all make sense and at the end of the story there will be a definitive answer, some “ah ha! moment” where everything is explained and you are satisfied with how the story turns out. This is not that kind of story. This isn’t just a story…this is my life. My new life. My new normal with Multiple Sclerosis.
On the one hand it seems like this has been going on for some time now. But in the same instant it feels like my life changed in the blink of an eye. The one thing I know for certain now is that my first symptom actually started back in November 2015 and it took me five months to figure out what my body was trying to tell me. Like they say, hindsight is 20/20.
In November I noticed some pain in my left eye. It only hurt when I looked all the way to the left, or all the way up and down. So I just tried not to do that for a day or two and eventually the pain went away. Problem solved, according to me.
Then a few weeks later it happened again, but this time it was in my right eye. Same thing though; it only hurt when I looked all the way to the right, or all the way up and down. Good thing I already knew the prescription for this! a.k.a. Just ignore it and try not to look that way for a day or two. Once again I didn’t think too much of this because after following my own (terrible) advice of ignoring the pain last time, it went away. Problem solved again, according to me, Dr. Julie. (Yes, I used to be one of those people who NEVER went to the doctor! I solved my own ailments via WedMD, Google and my nurse Mom.)
Turns out that apparently I am not as smart as I think I am because fast forward to January 2016 and the eye pain was presenting itself in my left eye again; but this time it was MUCH more intense. Also, this time it was accompanied by some pretty bad headaches and a tad bit of blurred vision as well. I went to see my primary care physician (PCP) who said I probably just have migraines, as they run in my family, but he ordered a brain MRI just to be sure. The MRI results were negative, a prescription steroid treatment seemed to dissolve the headaches, and I my head was finally on the mend! I decided to concur with my PCP that it must be migraines, problem solved.
Well, almost…I still had that minor blurred vision issue. I wasn’t comfortable driving distances or in the dark as it got worse as the day progressed. But my PCP chalked it up to just side effects of the headaches and instructed me to report back to him if it didn’t subside in a week or two. At this point there was still not a thought in my head that there could really be anything seriously wrong.
But then I waited another week or two and I still couldn’t see clearly. So I scheduled another doctor’s appointment. This time to see my eye doctor for her opinion. To make a long doctor visit seem short (which will be a recurring theme throughout this I’m sure) she diagnosed me with fluid on my left retina. This was the medical explanation I was looking for as to why I was constantly seeing things like I was wearing drunk goggles! Treatment plan according to my doctor: it will heal itself over time but you need to decrease your stress levels. (Let it be noted that this is what every doctor since this all started told me as well. Got it, thank you. I am a little stressed out of a person. It is a work in progress. Especially now.) But as I was saying… my eye doctor sent me on my way with a follow up appointment two months later in April, with the same order as my primary care doctor, report back to her if it didn’t subside in a week or two.
I waited another week or two and for a while I couldn’t seem to tell if things were getting better or not. One day I’d feel better but then the next I’d feel twice as bad. So I kind of just wanted, and then waited some more. Then on February 28th I woke up and the left side on the chest felt sort of numb. I thought maybe I slept on it funny and quickly dismissed the thought and carried about my normal day. I had a lazy Sunday with my fiancé. I didn’t really notice it unless I touched it; it was numb to the touch. I vaguely recall noticing the feeling (or lack thereof really) was still there when I went to bed that night, mainly because I always lay on my left side to fall asleep. But it was terribly uncomfortable for me so I had to ask my fiancé to switch sides of the bed with me. Which he did, of course, without question; because he’s incredible. I went to bed that night blissfully unaware that lesions where eating away at my central nervous system.
At the time all of these little things happening in my body were just that, little things. Looking back now I realize that was MS just starting to rear it’s ugly head. I remember having a conversation with my Mom following my “all clear” MRI report in January and telling her that despite the doctors telling me everything looked normal, I didn’t FEEL normal. I felt…weird; but I couldn’t explain it exactly.
I spent weeks, months even, trying to put feelings and symptoms I was experiencing into words and terms that other “healthy” people could understand. However, when I tried to explain my symptoms even I thought I sounded like a crazy person…so why the hell would anyone else believe me?!?!?! What would you think if you heard me say, “Well Doc, I feel like I have champagne bubbles popping all over inside my head but then behind my right eye it feels like a giant ice cube is lodged in my brain. Oh, and when I walk it’s as if my brain is telling my legs to go but they aren’t comprehending, they stumble or go sideways instead and feel like they are made of lead.” That sounds like the ramblings of a crazy person, or a drunk person, but in fact those are symptoms (just a few) of a person living with MS.
My body was trying to communicate with me and I didn’t know enough about MS to understand what it was trying to tell me. There were warning signs that I can’t fault myself for not seeing because I didn’t even know to look. Hindsight is 20/20 though and the only way to get any answers with this unpredictable disease is to learn your MS’s individual pattern, (if there is one.) The best advice I received as newly diagnosed; keep a symptom journal. (Even when you’re feeling good, especially then in fact!) This will help you find patterns, triggers, etc. for your symptoms and make it MUCH easier to inform your neurologist at appointments on what has been happening with your MS! And don’t ever worry about sounding like a crazy person to your doctor, they’ve heard it all before and then some!