Behind the Scenes of my Multiple Sclerosis
One of the most common questions that I get asked is, what is Multiple Sclerosis (MS). So, I thought I would answer this to the best of my ability in this post. I'm going to try my best to avoid using fancy medical terms and keep it simple.
The Football Player Analogy
This is the way my neurologist first explained my disease to me.
Imagine that the antibodies you have to fight off are like high school football players. Big and strong but not, according to the jock stereotype, very smart. They see the opposing team and recognize enemy school colors, pads and cleats. They instantly become ready to tackle their opponent into the turf. This is exactly how are antibodies work in a sense.
When you receive a vaccination, it's been broken up into pieces so your antibodies learn that when they see all those pieces together, it's time to attack the enemy.
Now imagine that those jock antibodies have hit their heads just one too many times and instead adding each piece together, it attacks by just identifying one part of the bad guy. This is a huge problem when the school nerd just happens to be wearing a rival team's colors and gets destroyed by the football team.
When something like this happens in the human body it's called an autoimmune disease. In the case of MS, the antibodies attack the sheath that covers the connectors between the neurons in your brain and spinal cord called Mylin. When they eat at the mylin, it makes it difficult for neurons to be able to send and receive the correct messages. The scarring that is left behind is called a lesion.
Hopefully this simple analogy has helped to give a bit clearer understanding to what exactly MS is.
Playing my own Game of Slots
There are several types of MS and I have what is called Relapsing and Remitting MS. This means that I'll have a relapse or a period of attack where new lesions form. Wherever the neurons being attacked are located will lead to the symptoms that I will experience. Then, I'll enter the remission phase and the human body will demonstrate how good it is at healing all the damage that has occurred.
I like to picture my brain sitting at a casino playing a game of slots except this isn't the kind of game that you want to win. There is no two disease patterns that are alike when it comes to MS so I can really speak only on the path that my illness has taken so far. I'm in a remission phase currently and I don't know how long it'll be before I have my next relapse or what will be effected when it happens. That's why it reminds me of a slots game with the wheel spinning over and over again because there is no sure fire way to predict how many times the game has to played for there to be a win and there is no way to predict if that win will only be for a really small amount or for the jackpot.
The last time the slot's wheel lined up for me was in February. My relapse was fairly mild overall as I only developed a new lesion on my Optic Nerve. That's the nerve behind each eye that send signals to the brain to interpret what you are seeing. Basically, I went very close to blind in my left eye. It was a very strange experience to know that there was actually nothing wrong with my eye but that the messages about what my eye was seeing was unable to be transmitted to the brain. I'm happy to report that in my current state of remission, my left eye is about 95% back to normal.
My Medical Management
This is another category that is going to very greatly between individuals so I can only share what my regiment looks like to help keep me healthy and living as normal a life as possible for as long a life as possible.
Unfortunately, at this time, there is no cure for MS and eventually the body becomes unable to compensate for the damage done. The medical field has made huge advances in managing this chronic illness allowing for patients to maintain a positive quality of living for much longer than in life past.
When I was first diagnosed, I was started on Avonex. It's a once a week injection that I had to do in my thigh or shoulder muscle. My personal experience with this medication was quite unpleasant. Giving myself the shot wasn't that bad but the side effect from the medication just plain sucked.
I would take my dose in the evening and a few hours later is when the pain would begin. Every part of my body hurt. Every bone, joint, and even my skin screamed in pain. Imagine having the worst flu of your life that lasts 24hrs every single week.
I was on Avonex for just a little over 6 months when I had my last relapse. My doctors believed that the medication prevented more lesions from forming but we both agreed that it would be best to try a different medication that would hopefully be a better fir for my MS.
After a lot of research and discussion, I was put on Gilenya. Which involved an initial trial in the hospital because the first dose in rare cases can cause the heart rate to drop so low that the heart could actually stop!
Thankfully, all went well and I'm much happier and side effect free on this medication.
I also take several other medications to help manage my day to day symptoms and I'll list them for you.
Day to Day Symptoms
I have grown pretty used to the constant pain in my neck and back. I have quite a few lesions in my spine that makes it so a lot of the discs in my back don't like to move. The pain in my spine literally feels like two kids pulling on each side to break it in half. I'm very thankful for being able to go to the pain management clinic and learn different strategies to decrease or cope with the pain.
I also get fatigued easily and this can get really frustrating when I can't go out at night with my friends. Even if I go to a family event, I know that I can plan anything else after because I will be too tired. I have had to learn to listen to my body and really pace myself even when I don't want to. \
I have coordination issues and my balance changes daily but it's not very good anymore even on a "good balance day". Sometimes I have involuntary movements or my limbs will get shaky.
I have a few other fun symptoms that will show up every once in awhile but this is my daily. For anyone else reading this that has MS or knows someone with MS, I'd love to hear about your experiences.
For More Information:
National MS Society
www.mymsaa.org
"I know this transformation is painful, but you're not falling apart; You're just falling into something different with a new capacity to be beautiful."
William C. Hannan
This is the way my neurologist first explained my disease to me.
Imagine that the antibodies you have to fight off are like high school football players. Big and strong but not, according to the jock stereotype, very smart. They see the opposing team and recognize enemy school colors, pads and cleats. They instantly become ready to tackle their opponent into the turf. This is exactly how are antibodies work in a sense.
When you receive a vaccination, it's been broken up into pieces so your antibodies learn that when they see all those pieces together, it's time to attack the enemy.
Now imagine that those jock antibodies have hit their heads just one too many times and instead adding each piece together, it attacks by just identifying one part of the bad guy. This is a huge problem when the school nerd just happens to be wearing a rival team's colors and gets destroyed by the football team.
When something like this happens in the human body it's called an autoimmune disease. In the case of MS, the antibodies attack the sheath that covers the connectors between the neurons in your brain and spinal cord called Mylin. When they eat at the mylin, it makes it difficult for neurons to be able to send and receive the correct messages. The scarring that is left behind is called a lesion.
Hopefully this simple analogy has helped to give a bit clearer understanding to what exactly MS is.
Playing my own Game of Slots
There are several types of MS and I have what is called Relapsing and Remitting MS. This means that I'll have a relapse or a period of attack where new lesions form. Wherever the neurons being attacked are located will lead to the symptoms that I will experience. Then, I'll enter the remission phase and the human body will demonstrate how good it is at healing all the damage that has occurred.
I like to picture my brain sitting at a casino playing a game of slots except this isn't the kind of game that you want to win. There is no two disease patterns that are alike when it comes to MS so I can really speak only on the path that my illness has taken so far. I'm in a remission phase currently and I don't know how long it'll be before I have my next relapse or what will be effected when it happens. That's why it reminds me of a slots game with the wheel spinning over and over again because there is no sure fire way to predict how many times the game has to played for there to be a win and there is no way to predict if that win will only be for a really small amount or for the jackpot.
The last time the slot's wheel lined up for me was in February. My relapse was fairly mild overall as I only developed a new lesion on my Optic Nerve. That's the nerve behind each eye that send signals to the brain to interpret what you are seeing. Basically, I went very close to blind in my left eye. It was a very strange experience to know that there was actually nothing wrong with my eye but that the messages about what my eye was seeing was unable to be transmitted to the brain. I'm happy to report that in my current state of remission, my left eye is about 95% back to normal.
My Medical Management
This is another category that is going to very greatly between individuals so I can only share what my regiment looks like to help keep me healthy and living as normal a life as possible for as long a life as possible.
Unfortunately, at this time, there is no cure for MS and eventually the body becomes unable to compensate for the damage done. The medical field has made huge advances in managing this chronic illness allowing for patients to maintain a positive quality of living for much longer than in life past.
When I was first diagnosed, I was started on Avonex. It's a once a week injection that I had to do in my thigh or shoulder muscle. My personal experience with this medication was quite unpleasant. Giving myself the shot wasn't that bad but the side effect from the medication just plain sucked.
I would take my dose in the evening and a few hours later is when the pain would begin. Every part of my body hurt. Every bone, joint, and even my skin screamed in pain. Imagine having the worst flu of your life that lasts 24hrs every single week.
I was on Avonex for just a little over 6 months when I had my last relapse. My doctors believed that the medication prevented more lesions from forming but we both agreed that it would be best to try a different medication that would hopefully be a better fir for my MS.
After a lot of research and discussion, I was put on Gilenya. Which involved an initial trial in the hospital because the first dose in rare cases can cause the heart rate to drop so low that the heart could actually stop!
Thankfully, all went well and I'm much happier and side effect free on this medication.
I also take several other medications to help manage my day to day symptoms and I'll list them for you.
- Baclofen - This is a muscle relaxer to help with the spasms in my back.
- Diclofenac - This is similar to Ibuprofen but it's safe for long term, daily use.
- Duloxetine - This is actually a depression medication but it's sometimes used to treat Diabetic nerve pain and it has worked great in minimizing the constant tingling in my hands and feet.
Day to Day Symptoms
I have grown pretty used to the constant pain in my neck and back. I have quite a few lesions in my spine that makes it so a lot of the discs in my back don't like to move. The pain in my spine literally feels like two kids pulling on each side to break it in half. I'm very thankful for being able to go to the pain management clinic and learn different strategies to decrease or cope with the pain.
I also get fatigued easily and this can get really frustrating when I can't go out at night with my friends. Even if I go to a family event, I know that I can plan anything else after because I will be too tired. I have had to learn to listen to my body and really pace myself even when I don't want to. \
I have coordination issues and my balance changes daily but it's not very good anymore even on a "good balance day". Sometimes I have involuntary movements or my limbs will get shaky.
I have a few other fun symptoms that will show up every once in awhile but this is my daily. For anyone else reading this that has MS or knows someone with MS, I'd love to hear about your experiences.
For More Information:
National MS Society
www.mymsaa.org
"I know this transformation is painful, but you're not falling apart; You're just falling into something different with a new capacity to be beautiful."
William C. Hannan
Comments
Post a Comment