I think it only makes sense that I not only write about my thoughts, feelings, and actions, but also to raise awareness for MS. This post may not be as interesting as my previous post but I think this one is extremely important. I want to share my symptoms and medical journey that lead to my diagnosis. MS is an autoimmune disease that, in my opinion, is very misunderstood. People here MS and think of the worst possible outcome: paralysis. I wonder how many people that read my initial FB post that thought I was in a horrible physical state because of my announcement but in reality you probably wouldn't even notice anything different with me if you ran into me at the store. But don't read that as me not experiencing symptoms and side effects of MS because they are there. Hopefully I can shine some light on MS with my experience and the limited research I have done. If this post piques your interest and want to do more research I encourage you to go to the National MS Society website and that website only when researching. They have the most up-to-date information and information that is based on research and studies they are doing and not information put out by pharmaceutical companies.
Here is the definition of MS from the National MS Society.
"Multiple sclerosis (MS) is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body."
To be honest, I don't like the part in here where it says "..often disabling disease" but I will get into that in a different post. Put in a different way: MS attacks the protective coating around your nerves which causes the passing of information through those nerves to be more difficult and thus causing you to have certain symptoms. There are a lot of nerves in your body to get attacked which makes MS very hard to diagnose because no two people with MS have the exact same symptoms.I have relapsing-remitting MS(RRMS) where there is an attack on my nervous system, my symptoms from that attack get worse over a couple weeks and then start to go away. So I have random periods of worsening symptoms and then go back to being pretty close to normal.
If I look back at the last 4 years, knowing that I have MS, I can pick out different times where I had an attack from MS that I didn't even realize was an attack. My first attack was in the summer of 2014 shortly after I got married. I was out for a run one evening and things just felt slightly off. It felt like my right leg didn't quite move the same or as smoothly as my left did. I couldn't put a finger on what was going on because I wasn't hurt and it didn't look like anything was different with my run if I had my wife watch me run. To be honest I just chalked it up to something weird but nothing serious and moved on. It ended up going away after a couple weeks to a month and I never thought about it again.
The next symptom that came up was double vision. I was playing indoor soccer at Northwestern College in the winter of 2015-16 and noticed that I would get double vision when I started playing but would go away as I stopped playing. (It should be mentioned that my team did win the indoor title that year. :) ) It eventually progressed to seeing double vision all day every day. The only time I didn't see double vision and didn't have a headache was when I was sleeping. I went to the doctor and they took an MRI of my sinuses and decided that I had chronic sinusitis which was causing my double vision. They gave me steroids for the infection and it worked. My vision went back to normal and, once again, I moved on with life not thinking much about it.
A year later I was once again playing indoor soccer at NWC and noticed some new vision changes when I played. I noticed that vision in my right eye went blurry as I started exercising and got to the point where I couldn't see anything out of my right eye. Just like the double vision my vision would go back to normal once I stopped playing. Thinking it was once again sinus issues I went to an Ear Nose and Throat doctor to have them check my sinuses and help me resolve my issue. She told me that my sinuses were indeed messed up but not the reason for my vision issues and passed me to an Ophthalmologist. The ophthalmologist examined me and I believe mentioned something called optic neuritis but told us not to google anything and passed me to a neuro-ophthalmologist in Omaha for further evaluation. After meeting with the doctor he told me I had Uhthoffs Phenomenon or a condition where vision in one eye goes blurry when your body temperature increases, hence why this was happening when I exercised. He told me 3 things could be causing this condition and he wanted to do an MRI. The three things were: brain tumor, MS, or an injury to the eye. Despite the poor odds the doctor told me that the MRI came back normal so there was no tumor and no evidence of MS. Not even enough evidence to do further testing for MS. He chalked it up to an injury to the eye. I couldn't think of an injury I had to the eye but I was happy with the results and went on with my life.
Right around this time is when things started to get a little more concerning for me. Shortly after that trip I started to get numbness and tingling in my body. It all seemed to happen on the right side of my body but my trunk and legs got to the point where, if touched, it felt like I just got out of an ice bathe. My trunk eventually got better but my legs ended up being numb on a 24/7 basis. They are still numb to this day to be honest. I can feel some things but much less sensitive than normal. To go with the numbness I also noticed some slight differences in my coordination. I like to think I was a decent basketball player at one time in my life but when I played pickup games with staff at NWC I had trouble doing a layup! I felt so uncoordinated and would struggle to get everything in my body working correctly to do a simple layup. I would miss just about every one! Talk about embarrassing! At this point I think I told Lauren that "though the doctor said I don't have MS, I think I have MS." Something just wasn't right. I was coaching the women's soccer team at NWC at the time and would frequently partake in drills that we did and I started to notice that I tripped over my feet more than I used to. My body just didn't quite work how it used to. It wasn't anything major but as someone that has played sports their entire life and know what my body is capable of doing, I could tell things were off.
At the beginning of 2018 I was playing on an inflatable slide, the huge like two story ones, and ended up hurting my knee. I know, it was hard for me to admit to people how I injured my knee. Talk about getting old! But I started doing PT and quickly noticed that my balance was horrible! I couldn't stand with my feet heal to toe on the ground for more than 5 seconds without losing my balance, let alone stand on one foot for any period of time! The PT eventually told me that something was up neurologically and that I should see a neurologist to see what is going on. That is when I setup an appointment at Mayo Clinic but that wasn't the end of my symptoms unfortunately. Around March 2018 is when the worst of my symptoms happened. It wasn't anything super noticeable to someone other than me but I could no longer run without tripping over my foot. I tried to run as my knee got healthier and felt so uncoordinated when I ran. I felt like a baby giraffe that was just born trying to figure out their long legs. Except for me, I didn't have long legs to figure out! Once I got running I could go about a 1/4 of a mile before I was unable to pick up my right toe high enough off the ground and would trip. I was able to catch myself but would have to walk for awhile to cool off before I ran another 1/4 until I tripped again. For someone who has run 5ks, 10ks, a 15k, and completed a tri, it was a huge change in how my body functioned and what I was capable of doing. Couple that with another case of optic neuritis and it was a rough month or so before that went away!
As things stand currently I am actually feeling really good! It took some time but I ran 3.16 miles yesterday and I was pumped! That is the furthest I have run without stopping for probably close to 8 months which is crazy to think about! I feel much more coordinated these days, remember I have the form of MS where symptoms eventually go away and you recover, I believe, around 90% of what you lost. I do run into issues with muscle weakness when it is hot out and I have been on my feet for awhile but that doesn't happen unless I go for a run at the end of a long hot day. As mentioned before I do still have numbness in my lower half constantly and I do still have some vision issues. I am still recovering from the optic neuritis that I got in March, and my Uhthoffs in the right eye is still slightly there. It isn't terrible but does still effect my vision slightly when my body temp increases. And when I say my body temp increases I mean exercise, hot shower, sitting in the sun, drinking a hot beverage or hot food, it can be a lot of different things. Otherwise I am blessed to be doing really well. I am able to do everything I need to do in my daily life and I am incredibly thankful for that!
MS is a really crazy disease that effects people in a lot of different ways that aren't the easiest to notice in someone. When you think of MS you usually think of someone in a wheel chair that can't walk or something but there are so many different symptoms that people can have with MS that you may not even know they are going through! One piece of advice I have for those non-MS people out there. MS patients are heat sensitive and experience most of their symptoms when hot, so if you want to help out someone with MS always have a nice cold popsicle ready to help them deal with their symptoms. :)
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