NOTE: please excuse any spelling or grammar errors as I’m currently using voice recognition software to write for I can not type at the moment nor can I see well enough to edit my entries with the detail I normally would.
My name is Matt Allen G. I am 20 years old and about two weeks ago I was diagnosed with Multiple Sclerosis, also known as “MS” an autoimmune disease that attacks the central nervous system or “CNS”. I have decided to start this blog for several reasons; first, to journal my progress through my first exacerbation towards my first remission. Secondly, to build a small knowledge base for anyone else out there who may be experiencing the first symptoms of MS and need some answers to the many questions they are sure to have. Thirdly, to share my experience with this disease, to help others understand that this is not the end of the world, and to hopefully help people connect and spread awareness along with hope, motivation, and power.
By reading this blog, you should hopefully get a good idea of what living with this disease is like while always understanding that the disease affects everyone differently. When I first started doing research on multiple sclerosis the first thing I noticed was I could never get a straight answer to any my questions. The disease is too unpredictable and there are too many variables in how the disease acts. So, everyone reading this must understand, your experience with this disease will more than likely differ from mine and anyone else’s. However, there are of course many things that everyone with MS will have in common. I for one, have so far experienced several uncommon symptoms and have not found too many others who have experienced these symptoms as well. So now, if there is anyone else out there experiencing some of the weird symptoms that I am they can see how I dealt with them and how I recommend everyone else to deal with them rather than living with unanswered questions.
There are two things in this disease that I find to be worse than all my symptoms combined. Not knowing and playing the waiting game. Hopefully, I can help bring ease and some peace of mind to anyone else who finds themselves equally frustrated with these two torturous demons.
Where it All Began for Me
So far, my experience with MS has lasted about two months or so. 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 on 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 (that small stream of water leaking from the faucet while the shower is on), 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 and 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 (on the back of my insurance card) 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 the problem 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 waist, up my back, and 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 steroids 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, the doctor I saw 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 first started noticing a drop in fine motor control when I sat down to play guitar. 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 fine motor skill.
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 this was but what I did know was that I had heard the term “MS” on my favorite TV show ‘ House’ a million times so I knew that it could not be good. She ordered an MRI and a CAT scan. When I got home my research began. It was not looking good.
After my MRI my symptoms had got worse. I could barely walk, my hand was at its worst, and I had pretty much lost my sense of taste except for one small portion on the right side of my tongue. 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 little white spots on both sides of my brain. Looks like multiple sclerosis… the next step was a spinal tap to confirm the diagnosis. And then more steroids from an IV. My neurologist also ordered a wheelchair for me because walking was just too difficult and dangerous now, so it was time for me to suck up my pride, something I have 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. However, it honestly was not that bad. The local anesthetics hurt worse than the spinal tap itself. It was not pleasant, but it was not as bad as everyone makes 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 with steroids which are supposed to help
clear the lesions and hopefully most my symptoms reduce the time it takes for a relapse/flare to end resolving (or at least improving) the symptoms. Obviously, I was eager to start.
This is where the number one question arose; how long until the steroids work? I could not get a straight answer… so let me tell you what you can possibly expect. 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 for anyone wondering how long they may be waiting for the steroids to work, you’re looking roughly at about two days to two months … But again, this is not technical, the disease is far too unpredictable, but from what I heard and what I was told, that’s pretty much what you’re working with.
In my case, I did not see any immediate effects, not right away at least and when I did start seeing progress it was nothing drastic. Every day now, I have woken up hoping that when I jumped out of bed I would be magically cured. Now maybe, for some people, this may be the case as far as waking up to realize a symptom has disappeared. For me it has been much more gradual than that. I would compare the rate of my recovery to the rate at which my hair grows. Just like I know my hair is growing every day, I know I’m getting better, but I can’t exactly measure how much better I am actually getting just like I can’t tell how much longer my hair is today than yesterday. All this time later? Looking back? I know my hair has definitely grown and my body as definitely healed.
So anyway, I was to be on a steroid IV drip for five days, two hours a day. At this point, some new symptoms are still arising. When I said that I had some uncommon symptoms I was not kidding. 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.
The other symptom was my vision, it was starting to go. 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 lie around and watch TV. Now I couldn’t even do that! So I spent most my time lying down and just 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.
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 also 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 eye was blind. So, at this point it looked like the problem was in my brain where the signal from the optic nerve is interpreted as “vision”. Glasses may help but ultimately I’m waiting on my lesions to clear because that is what is actually causing the problem.
Finally done with my steroids, no more being stuck with needles! My hiccups were finally gone and now it was just me and my worst enemy, time… it was time to play the waiting game which is pretty much where I am at right now but since my steroid treatments I have seen much progress which I have kept a journal of and will post later on. In addition, I have started taking oral steroids again and am in the process of choosing a preventative medication that I will probably end up taking for the rest my life. This medication will help me stay in “remission” and reduce the number of relapses (exacerbations) I get every year, so in my opinion? It will be worth giving myself a shot every day.
My symptoms in order of appearance:
- numbness on right side of my body
extreme skin sensitivity to cold on the right side of my body (skin)
drop foot in left leg
occasional muscle tremors in left leg
loss of fine motor control in left hand
loss of taste
noticeable slowing of cognitive abilities
impaired hand-eye coordination
occasional slurred speech
loss of balance and ability to walk
restless leg syndrome