My name is Matt Allen G and in August of 2010 at the age of 20, I was diagnosed with Multiple Sclerosis (MS). This is the story of my first encounter with this life crippling disease that effects over 250,000 people in the United states alone.
Where it all began for me
I awoke one night at about 2 or 3 in the morning with a sharp pain in my lower back shooting down my left leg. It was excruciating and I’ve never experienced anything like it in my life. I thought maybe I had just slept in a bad position so I decided I was going to try to take a hot bath to relieve some of the pain. Before I could even get in, I found myself laying on the floor in pain.
I ended up going to the emergency room where I was told it was probably just a sciatica which is caused by inflammation resulting in pressure against the sciatic nerve: pain. They sent me home with all the pain killers I could ever want along with a hefty medical bill for the ER visit.
For the next week or two I was fine, wasn’t even taking my pain killers. I now however, started waking up with a warm sensation in my right leg as if the hot sun was beaming through my window and shining upon my leg. Though my leg felt hot, it was not warm to the touch. At first I blew this off to be nothing like any other guy would…
About three or four days after I started noticing the warm sensation I realized something was wrong. I was taking a shower when I crossed my right foot under a small stream of water leaking from the bathtub faucet. If you have ever seen this in the past, you probably know that when this happens the water is usually extremely hot. When the water touched my foot I experienced a strange tingly sensation. I was not fully awake so it caught me by surprise and I did not know what to make of it until a few seconds later when I crossed my left foot under the water and burned myself. Confused, I crossed my right foot back under the water and it was at this point that I realized my right foot was numb. I could’ve held my right foot under that hot water all day if I wanted to.
After I got out of the shower I started experimenting. I used a knife to see if I could feel the sharp edge or point. I could not… Although, it was not completely numb because I could still tell that something was touching my foot. I would compare it to a trip to the dentist. When the dentist shoots you up with Novocain your lip usually feels fat. You still have some basic sensation however if you were to bite into your lip you could easily break the skin and not know it. This is how my foot felt.
I immediately called the nurse line where it was recommended that I head straight to urgent care. When I got there they told me it was more than likely my sciatic nerve acting up again despite the fact that this time it was in the other leg. Nothing to worry about, it will go away…
By the next day the numbness had spread up my leg to about my knee. Within a week it spread up the rest of my leg, past my waste, up my back, finally ending below my right shoulder blade. At this point, I had done enough research to know that the sciatic nerve starts at your lower spine and travels down each leg. Therefore, there was no way it could effect above my waist. This was not my sciatic nerve…
Back to urgent care, looks like a pinched nerve in my neck. More painkillers and some steroids (Prednisone) to reduce inflammation. I was suspicious of this pinched nerve theory because I didn’t understand why my symptoms would start at my foot and work its way up if the problem started in my neck. But despite my suspicion my doctor seemed to be sure that this was nothing more than a pinched nerve.
Over the next couple of weeks my body began to fall apart at an extremely rapid rate. I first developed what is known as drop foot or foot drop. This is basically the paralysis of the muscles in your lower leg that are in charge of lifting your toes up when you take a step. As a result your foot drops and drags on the floor which can cause you to trip, fall, and seriously injure yourself. I struggled with walking for about a week and at first it seemed like I would be able to deal with this okay.
About a week later I started losing the fine motor control of my left hand and my walking had become much worse. I was loosing my sense of balance. As far as my left hand, I first started noticing a drop in fine motor control when I sat down to play guitar one day. I could not seem to hit the right frets on the neck of my guitar and at first I played the denial card. I told myself I probably just haven’t played guitar in a long time and have lost some of my skill. Within the next few days it was clear, my hand was no longer functioning properly. The strength seemed to be there still but the coordination was gone. I couldn’t type on the computer, do my hair, button my pants, or pretty much anything else that required any kind of coordination with my fingers. Soon I realized the left side of my body was slowly going paralyzed…
A Possible Diagnosis
At this point I had finally made an appointment with a neurologist. Right off the bat, she told me her guess was MS. At the time, I did not know what MS was but what I did know was I had heard the term on my favorite TV show “House” a million times so I knew that it could not be good… She ordered an MRI and CAT scan. When I got home my research began and it did not look good but we’ll get to that in a minute…
Around the time I got my MRI done my symptoms had got way worse. I could barely walk, my hand was useless, and I had pretty much lost my sense of taste except for one small portion on the right side of my tongue. Weird…
My MRI results were in so it was back to the hospital to review the results. My MRI showed multiple bilateral lesions
. Basically, there were lots of spots on both sides of my brain. Looks like multiple sclerosis… The next step was a spinal tap to confirm the diagnosis and in the meantime, I was to get started on a stronger does of steroids called Solu Medrol which is administered through an IV. My neurologist also ordered a wheelchair for me because walking was just too difficult and dangerous at this point, so it was time for me to suck up my pride, something I had far too much of.
I was a little nervous about this spinal tap procedure because I thought it would be a brilliant idea to watch the procedure being done online before I had mine. For those of you who don’t don’t, a spinal tap is where they stick a giant needle into your spine to extract spinal fluid. However, it honestly was not that bad. The local anesthetics actually hurt worse than the spinal tap itself. It was not pleasant, but it was not as bad as everyone made it out to be.
Now that the spinal tap was done I got to start my steroid treatment the next day. The plan was to hook me up to an IV and pump me up with steroids which were supposed to help clear my lesions (I’ll explain this further below) and hopefully most my symptoms. Obviously I was eager to start.
This is where the number one question arose, how long until the steroids worked? I could not get a straight answer from anyone… I was told for some people, improvements are noticed after about the third infusion. For others it can take up to two months for symptoms to clear up. So I had between 3 days to 2 months before I would possibly start seeing some improvements.
In my case, I did not see any immediate effects and when I did start seeing progress it was nothing drastic. Every day I would awake hoping that I would jump out of bed and be magically cured. This was not the case, instead, my progress was very gradual… I would compare the rate of my “recovery” to the rate at which my hair grows. I know that technically everyday my hair has grown but how much I couldn’t tell you. After a month or so however, it is much more clear that I have gained a couple of inches. This was how my “recovery” was, I couldn’t tell any difference on a daily basis, but after a long period of time I could look back and see settle changes.
Anyways, back to my IV treatment: I was to be on a steroid IV drip for five days at two hours a day. I was almost done with my treatment, but some new symptoms slowly arose, some weird ones including… Severe hiccups… As funny as it sounds, I could not stop hiccuping for about three days. I would hiccup about every three seconds for hours at a time. This was annoying, frustrating, and flat out ridiculous! I tried every home remedy imaginable, and nothing helped.
My Diagnosis: Multiple Sclerosis (MS)
Halfway into my Solu Medrol treatment I received a call during the middle of one of my infusions. My Spinal tap results were in and I did in fact have Multiple Sclerosis. Wow, not sure what to say but “OK”.
So now to answer the question of all questions: What is Multiple Sclerosis? Briefly put, MS is an autoimmune disease that attacks the central nervous system. So basically my immune system is attacking my brain and the nerves in my spine. It destroys the protective covering of my nerves known as “myelin” which acts as an insulation much like electrical wires need insulation to function properly. These damaged myelin spots are what come up as “lesions” on an MRI and are the cause of all MS symptoms.
At this time there is no cure for Multiple Sclerosis. There are FOUR TYPES
of MS and at the moment it looks like I have what is known as Relapsing/Remitting Multiple Sclerosis (RRMS) which is the most commonly diagnosed form of MS. People with RRMS experience periods of relapses known as “exacerbations” and then periods of remission where most symptoms subside for some time.
to read a much more in-depth article explaining what Multiple Sclerosis is.
Let’s Wrap This Up
So yeah, anyways, the other symptom I started noticing during my IV treatment was blurred vision… Vision loss is typically one of the first symptoms people experience when diagnosed with MS but for me it wanted to save the best for last… As it was, all I could do all day was lay around and watch TV. Now I couldn’t even do that. I spent most my time laying down and listening
to TV, preferably the History Channel or the Discovery Channel so I could at least learn something while I laid there like a vegetable with ears.
(The circles represent each of my eye balls, anywhere shaded black is where I was blind, the darker the black the more blind that spot was.)
It was now off to an optometrist to get glasses. They helped a little bit at first but by the next day my vision had further deteriorated so the glasses no longer worked as well as they had the first day. A little less than a week later I visited my uncle who is an optometrist. He looked me over and did a more in-depth examination to find that my eyes and optic nerves were in good health but after taking a detailed peripheral vision test we learned that the left side of each of my eyes were blind. So, it looked like the problem was in my brain where the signal from the optic nerve is interpreted. Glasses may have helped the fuzziness a bit but ultimately I was waiting on my lesions to clear before I could expect to see any progress with my blind spots.
I finally finished my IV treatment and my hiccups finally went away. It was now a waiting game of laying around half numb, half paralyzed, and half blind hoping to recover soon. I was given more Prednisone (oral steroids) to slowly taper me off of the Solu Medrol (IV steroids) and soon after that I chose my “disease modifying medication” Copaxone. Copaxone is a subcutaneous shot that I have to give myself everyday in hopes of prolonging my periods of remission and reducing the amount of relapses I will have throughout my life.
After a few months I finally reached a point where I could declare myself to be in remission! I was once again going on hikes, camping trips, and even motorcycle riding
! I was as happy as I could ever be with a newfound respect for my body! This unfortunately only lasted about a month before I relapsed again. My second exacerbation (relapse) has not been nearly as bad but it has definitely slowed me down a bit… This is where I leave off because this next chapter of my journey with MS has not yet been written.
I have high hopes for my future regarding my good health so I remain as positive as I can! Keep an eye on my Progress Updates
to see how I am doing!