12
Jan 2015

Symptoms

Symptoms
I've struggled publishing this blog for a long time. In fact, I've started over and over, never achieving what I'm trying to say. I've been wanting to write a blog on symptoms. I've heard many questions asked by different people on the topic, asking for a variety of reasons - from wanting to understand more of what I go through to figuring out if their symptoms are experienced by someone else. If you look up MS symptoms online, you get the typical list - fatigue, numbness, pain, etc. All of these are so vague and, in my opinion, not very helpful. So, whatever the case is for you reading this, I hope this is seen as educational rather than complaining on my part.

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I can remember not long after I was diagnosed, sitting in my parents' living room watching a designing show (probably) with my mom. Out of nowhere I would have this shooting pain all the way up and down my leg. It would last for less than a minute and be done. That would happen several times a day, making it normal for me. I looked over and asked my mom, "do you have that too"? She would then give me this look of "you're crazy" and we would laugh it off. No, it's not what everyone feels and that was the beginning of me experiencing MS. I'm thankful that, for the most part, I've been able to find humor dealing with these things. I encourage you to do the same because it makes things easier going through the difficult times. This might be a silly illustration, but I think of our bodies as one big computer. For those of us with MS, we know that our immune system attacks the "wires" inside of us (the myelin sheath covering our nerves) which can cause glitches in our system; just like in my example of random shooting pains in my legs. I still have random weird feelings every once in a while. In fact, sometimes, I have this weird sensation in my legs, mostly toward my ankles, that feels like cold water is dripping down my leg. I think every time this happens, I believe there surely has to be water on my leg only to find nothing and within a few minutes this goes away. Weird, huh?

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Fatigue has been one thing that I've really struggled with over the years. About three years after my diagnosis, I complained to my neuro that I was just SO tired ALL the time. I worked in a small office part-time and was in college. Many days I would leave for my lunch break, pick up a quick bite to eat, then park my car in the mall parking lot to take a cat nap before heading back to work. I HAD to get a few minutes to recharge my batteries because I just couldn't stay awake. And, no, it wasn't the endless amount of hours I was working, or the all night studying for a test. I got a sufficient amount of sleep during the night, but I would feel like a huge weight was pushing down on my shoulders and I couldn't stay awake. I was 22 years old and slept a lot! My neuro told me that I was experiencing fatigue - extreme tiredness. I had read that fatigue was a symptom of MS, but couldn't relate until I felt it. I did start taking Provigil (then switched to Nuvigil because of insurance) which definitely has helped.

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Over the last 5 years, I've also experienced tingling or pins and needles type feeling mostly in my right arm and right side of my face. It has been extremely bothersome at times. And, it seems that these symptoms show themselves more if I get extremely tired. A few years ago when I had some tingling in my right arm, I also lost the control in my hand. I couldn't grip a pen or get my arm to stop moving.

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Numbness is also one of the "common" symptoms and I've had some unusual things happen with this one. First, if you look back through my blogs, I wrote about being numb from my waist down. This happened about 3 months after I had my second child. We still laugh about how I tried to jump out of bed and run into the other room when I just fell to the floor. Yes, it does seem awful, but I'm laughing as I'm writing this because, c'mon, that was funny! (No, I won't laugh at you if something like that happened, but I will laugh at myself.) The other thing that happened to me that I haven't really read anything about is my tongue going numb. Yes, you did read that right. I could tap on my tongue and not feel it. Also, I'm not really sure what happened, but something did to my taste buds during that time. Everything I ate tasted absolutely disgusting! After this started, Casey and I decided to make our favorite meal - steak cooked medium rare with a blue cheese cream sauce and fried onions on top! I just knew in my mind that this was going to taste amazing! I took one bite. That's all I had and I was done. I don't really remember how long this lasted, but I lost so much weight, to the point where my face was sinking in and my clothes were falling off. I wasn't exactly healthy looking. I ended up trying a Boost chocolate drink and to my surprise, it was ok! I do not recommend replacing food with just Boost drinks, but I did until I could eat again.

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I believe in some of my older posts I do talk about having optic neuritis. The first time I had it led me to be diagnosed with MS. Two years later I had it again in my other eye. Optic neuritis is when your optic nerve (connects your eye ball to your brain) becomes inflamed and your brain is unable to get the message of what your eye is seeing which causes you not to be able to see. Not being able to see doesn't mean that everything turned black. It does mean that I could hold a piece of paper 2" away from my eye and not be able to read it. It is some of the worst pain I've experienced. Constant headache with the feeling of a dagger going into your eye every time you move your eyes. I've only partially recovered by this. My optic nerves were damaged and now if I tilt my head 45 degrees to the right or left, I see double. I have had to learn to do my makeup differently and I know that when I lay down on the couch I either have to cover one eye or sit up a little bit. Minor things to change, but a great reminder to be grateful that I can see!

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The last symptom is another one that I think has had more attention the last few years. After I had my first child, I had severe vertigo (oh, there's another one :) ) and hearing loss in my right ear. (If you haven't noticed, my right side seems to be where most of the damage is.) I could hear about as well as I could see when I had optic neuritis. Does that make sense? Basically, I could barely hear and what I could hear I was unable to understand what was being said. I relied heavily on my left ear. To this day, although my hearing has greatly improved, I still only hold the phone up to my left ear.

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Like I said when I started this blog, I don't want to sound like I'm complaining. I look back at these times when I've had relapses and think, The Lord allowed me to go through these trials and I'm grateful because my relationship with Him has been made stronger. I encourage you to not get down about any ailments you might have and know there are others that are/have gone through the same thing. I was told by my last neuro that my hearing loss, although it happened at the same time as my vertigo, wasn't related to MS. He also didn't really seem to believe me when I told him about food tasting bad. I appreciate doctors who study things like MS, but they can have head knowledge all they want, but don't really know what it feels like. So, having a great doctor that will listen to you is important and know to listen to your body.

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Also, be thankful for the things you can do. Were you able to button your shirt today? Brush your teeth? Comb your hair? Those things might seem so small, but they actually take coordination and strength in your hands to accomplish.

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Keep smiling and rejoice in the day The Lord has made!

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