The definition of Multiple Sclerosis from the National MS society is as follows:
“Multiple sclerosis (MS) involves an immune-mediated process in which an abnormal response of the body’s immune system is directed against the central nervous system (CNS), which is made up of the brain, spinal cord and optic nerves. The exact antigen — or target that the immune cells are sensitized to attack — remains unknown, which is why MS is considered by many experts to be “immune-mediated” rather than “autoimmune.”
How I explain Multiple Sclerosis to people:
Multiple Sclerosis is an auto immune disease that attacks the nerves in my brain and possibly my spinal cord. I tell people to think of it as a mosquito bite on the brain. My immune system is the mosquito, and the lesion it causes is the bite on your skin. It gets inflamed and is very annoying but there are ways you can fight the bite. When I tell someone I have Multiple Sclerosis most people don’t know what that is, which doesn’t surprise me, I had no idea what it was either a year ago. It is a strange thing to explain an auto immune disease to someone, because it’s not a regular sickness where I look green or I have scratchy throat. In fact I could have a flare up right now and not many people would know the difference by looking at me while I’m at my desk.
What were the symptoms of Multiple Sclerosis?
A flare up of MS, from what I understand, is when a new or old lesion on your brain or spinal cord starts to get inflamed. This is what causes the symptoms. My symptoms were: Balance problems, double vision, no depth perception at all, slurred words, and the worse fatigue I’ve ever had. My balance and depth perception were so bad that I would have people jokingly ask me if I was drunk at my job. At least I hope they were joking.
Before I got diagnosed:
It started in late spring of 2016, around May. I started telling my husband that I felt like I was a second off. That when someone talked to me it took an extra second for my brain to process what they were saying, then another second for me to figure out how to respond. I was also complaining about being tired, all the time. I would sleep for 9 or 10 hours at night, come home after work and nap, then go to bet shortly after. Then the double vision started. At first it was just in the mornings for a few minutes, then it started lasting longer and longer. After that came the off-balance and depth perception issues. I would fall over nothing, run into walls, door ways but think that I was clearing them before my face ran into them. We moved somewhere with stairs and I would get down them by falling, I wish I was exaggerating. Around the end of June it started getting worse so we went to a walk in clinic and they sent me to the ER. The ER sent me home saying I was just dehydrated after doing test after test not being able to find anything wrong. A few days later I went to a different clinic that set me up with a cardiologist for later that week. I didn’t end up being able to make that appointment. The next morning I woke up, fell down the stairs and called for my husband because I knew I couldn’t drive myself to work. He came down stairs to find me on the couch trying to get dressed while laying down, because I couldn’t stand longer than a few seconds. I then started to get really dizzy and couldn’t stop puking. At this time he put me in the car and took me to a different ER.
My first MS Hospital experience:
This ER was amazing and got me into a room immediately. They ordered an MRI after talking to me for a few minutes when I told them I couldn’t really see them, and because my puking wouldn’t stop. After puking all over the MRI tech they finally got a good picture and sent me back to my room. A few minutes later the doctor came in looking a bit worried. He said they needed another MRI. On my way back to my room from the second MRI the doctor stopped me in the hall and said that the radiologists that looked at my scans told him to order a spinal tap SAP. When he came back into my room to proceed with the spinal tab my husband and I were very nervous, why did they need spinal fluid? After he completed the spinal tap (which my husband played Steve Miller Band while it was happening to calm me down), he proceeded to tell us that a spinal tap was needed because the radiologists was thinking that I had a disease called Multiple Sclerosis. Arron and I had never heard of this before, and we did what every millennial couple would do, we googled it. I would not recommend doing this without any further context from a doctor. The next hour or so while waiting for someone to give us a udpate were miserable. We read article after article and just became terrified. Eventually the doctor came back and let me know that I was being transfered to a hospital in downtown Nashville where they had great nurologists. It was a very long and tiring day. We finally got settled in my new room around 8pm that night and this would be home for the next few days. The nurses were amazing and did their best to keep me calm as Arron had to go home for the night. The next day I had a full body MRI that took almost two hours and just tried to sleep for the rest of it until Arron could come back. That afternoon a couple of doctors came to my room, they were neurologists. They proceeded to tell me that they themselves couldn’t diagnose me, that I would have to go see a neurologist for a few months before that could happen. They could, however, treat me because my symptoms were that bad. The treatment for MS is just a crap ton of steroids pumped into your system, either by IV or through a pill. They chose IV since I would need it quickly and a lot. They proceeded to pump my IV with about 350 ML of steroids every 6 hours for the next 3 days. It was crazy because normally when you’re on steroids you feel like the hulk, but for me it just made me feel semi-normal. I could keep my eyes open for longer than 15 minutes, I could walk around without running into every wall, just a few. After 4 days I was so ready to get out of there, to be able to process what just happened. We went home and I started to feel a bit better. I made an appointment with a neurologist in Nashville for a few weeks out, and attempted to get my shit together. I went back to work the next monday, which looking back was not a good idea, but I’m a workaholic so I did it anyway. I remember sitting at my desk thinking, I’m going faint. At this moment one of my coworkers calming got up from their desk, came to mine and whispered, “If you think you’re going o faint put your head on your desk and breath. I’ll get you some water”. Some of the best advice ever, thank you for not letting me faint in the middle of the office.
The next few weeks were a blur but I eventually got to go see my new doctor. My frist visit was disappointing, he couldn’t do anything yet. When he did my reaction tests and watched me walk around he could tell that the steroids weren’t done with me yet. Turns out it takes about 3-4 weeks for steroids to get out of your system when you’ve had that much over a short period of time. Makes sense to me, but I was frustrated because I still didn’t really know what was happening. Eventually they got out of my system and my doctor was able to diagnose me with Multiple Sclerosis. I remember walking about of the doctor’s office shocked, confused and with a packet in my hand going over my first treatment plan. I sat in my car for about 30 minutes just staring into the parking lot listening to the radio. I had known for the past few weeks that there was a very good chance this would happen, but it still felt un real to me. I had more questions in my head, but no idea where to ask them or how to go about feeling normal again.
A year later:
It’s now a year later and I’m here writing about my journey. My journey is far from over but I’m excited with the progress I’ve made. I couldn’t have done this without my husband, I hope he knows that. I’ve learned a lot over the past year and I hope to continue learning. I’ve learned that I can’t get sun burnt or I’ll hate my life for a couple of weeks. I’ve learned that if I get too exhausted and stressed out that my body will start having a fake flare up to get my to stop. I’ve learned that what I eat has a big impact on my symptoms. I’ve also learned that I have way more to learn about this disease, but mostly I’ve learned that I don’t want to be scared of it anymore.
If you’re reading this and you have this disease I want you to know that you’re not alone, and that there are ways you can help yourself not worry about it. I wont say that I’ve 100% figured it out, I’ve only known about this for about a year, and I’m still young enough to be a bit naive when I want to be. If you’re someone who wants to help the person you love or a family member know that this is scary, but there are ways you can help them. I’ll do a separate post on that in the future.
This blog wont be 100% MS based, but I am going to write about it more often. At first I didn’t want anyone to know about it, know that I have it. But after living with it for a year and doing my own research I’ve come to realize that isn’t nothing to be ashamed of. That I want to be a voice for those who are in my position, and help those who just want to help someone who has MS. You can look forward to more talk about how food affects MS, how life style can help, and maybe some hacks that I learn along the way. There are a couple links below to more information if you would like to read up as well.
Stay out of the heat,
National MS Society, Definition of MS: http://www.nationalmssociety.org/What-is-MS/Definition-of-MS
A great article about what you SHOULD say to someone with MS: http://www.keepsmyelin.ca/uncategorized/5-things-you-should-say-to-someone-with-multiple-sclerosis/