My name is Matt. I am 22 years old.
In August of 2010 I was in a hotel enjoying a weekend getaway getting ready to spend the day at Disneyland. I decided to take a nice hot shower, just needed to relax you know? I lied back in the tub with the shower running and my foot slipped under the faucet which was drizzling some water like most facets do. It felt... weird... I looked over at it wondering why it felt like... a faint, liquid, electricity. What ever, I must just be tired... Then my other foot slipped under that stream of water and it burned! I jumped! What the heck? I put the first foot back under... no heat... just that weird sensation again. I again checked with the other foot, scolding hot, what the heck?
I left the shower and grabbed a plastic knife as I plopped down on the couch. I began poking my foot and sure enough, I could not really feel it. It felt like I was touching my foot through a towel or thick blanket, very faint, very dull... I called urgent care and they said I should come in so that is what I did instead of Disneyland.
After seeing several doctors it looked like I had a pinched nerve but then the numbness started spreading up my foot, shin, leg, back, and my shoulder... If it was a pinched nerve in my neck why would it be effecting my body from bottom to top, Shouldn't it be from the source down? Well, I didn't know much about all that, but over the next couple of weeks my left side went weak, limp, my foot was dragging, my vision was fading, I lost my sense of taste, nothing felt right with my body! What was going on??? Was I dying or something? I saw a neurologist who did an MRI. In a cold and calculated way she told me “I'm thinking MS”. I had no idea what MS was, I had only heard it on House (Medical mystery TV Show) so I knew that it was bad. I left and looked it up, since she did not tell me what it was, abd Multiple Sclerosis, it was not good that was for sure. Chronic? Crap...
One spinal tap later I was diagnosed with MS... I had to start a daily injection, and I had to avoid heat, this was all so new, I was plopped into a world I was unfamiliar with! I was given oral Prednisone and I slowly starting to improve... For the next year and a half or so I was doing just fine! I still had weird symptoms like electric shocks (Lhermite's Sign”), stabbing pains, vision issues, Restless Leg Syndrome, things that now I would consider minor but at the time seemed so drastic.
In February of 2012 I had a major relapse that sent me to the hospital... This part of my life is foggy, I just remember my right leg was tight and stiff as a board and I was in so much pain! They gave me Dilaudid and after much debating I was off to a physical rehab. I was rapidly declining and by time I made it to my room I really could not move from the neck down... Everything felt heavy and limp. I spent two months there working with physical therapists, occupational therapist, and speech therapists and I was mostly in a wheelchair but towards the end I was sometimes using a walker for short distances with someone right behind me with their hand on my hip. Not only was my body falling apart but so was my mind. My memory was horrible and so were my problem solving skills! I more or less stopped breathing at one point thanks to a lung infection, I nearly drowned in my own vomit, I even fell out of bed, I could now feel my own mortality which was a weird realization. If I was not dying there were definitely times that I wish I was! Even though they wanted me another month I was done, I could not take it anymore, so I told them I wanted to leave, I felt that I could continue the reinforcement of what I had learned back at home so I got to leave.
After I left rehab I was in and out of the hospital almost every month and a half! Steroids, steroids, steroids, it did not take very long to build a tolerance to them, no longer did they seem to help. The neurologist I was seeing at the time told me that “how ever you are in six months is the best you will ever be, this is the course of the disease.” “What about Tysabri?” I asked. “Oh I don't really like to follow the literature on that drug”, oh really? Because I don't really like to be stuck in a wheelchair visiting the hospital every month! I got a referral to another MS specialist in Riverside, one major difference, he was an actual specialist! He was not just slapping that title on his name tag to make more money, he was smart! Finally a doctor who knew way more about MS than I ever will, that's the way it should be!
Now I am on Tysabri, it turned my life around, it gave me my life back! Sure I did lots of exercising and dieting and all that good stuff but Tysabri and ACTH kept me from constantly relapsing so I could actually focus on swimming instead of “not drowning”. It's like I was trying to build a giant hill out of sand while someone else was digging it away causing it all to collapse... Tysabri got rid of that guy and now I can just work on building my mountain without it falling apart! I still have much improving to do especially since my doctor keeps saying the medication has not really even fully kicked in yet! I am very excited to see what happens in the next year because I honestly never thought that I would ever be back to where I am now!