Multiple Sclerosis and Me

I have multiple sclerosis (MS) or should I say, MS has me.

To understand what I mean you need to know some of my story:

A lifetime of anxiety and depression makes it all so much worse.

In 2010/11 I had an unrelated medical mystery that required an MRI, it found the problem, it also found signs that I could, maybe, have multiple sclerosis. Since there were no other signs or symptoms that I could have MS, it was decided to just monitor with yearly MRI's and occasional blood testing for Vitamin D levels. Vitamin D matters, even more so for people with MS and probably other autoimmune diseases. My levels were so low that they had me taking 5000 UI per day. A healthy person in Canada should be taking 1000 UI per day because we don't get a lot of the good strong sun that countries closer to the equator get.

Fast forward to late 2012, after several MRI's showing potential lesions (known also as plaque or scarring) and a few "maybe" symptoms later, they still didn't want to say it was or was not MS. Then one afternoon, I took a nap while I waited for my, then, boyfriend to get home from work. I woke up a few minutes before he got home and stumbled into the living room to lay on the couch. None of that was unusual, I was often a bit unbalanced when I first woke up. This time was a lot worse, when he got home and I sat up to greet him the world just spun, or I was spinning, my mind couldn't even comprehend what was happening. I couldn't sit up, I could barely eat. Lying down didn't help me either. This lasted five days before I caved and went to an emergency room, my neurologist just happened to be out of town exactly when he needed to see me having an "episode" or "relapse." One hospital sent me to another, but before they gave enough attention so that I could tell a doctor that I might have MS, the MRI suite had shut down for the night. So they gave me enough lorazepam for a few days to help with sleep and said sorry they couldn't do more! That was the tipping point for my diagnosis, even though my neurologist didn't get to see it, it was an obvious symptom. With the few other, more minor ones and the most notable prior issue was my skin was oversensitive at the same time as feeling like the muscles underneath were numb. One more MRI later and the diagnosis was essentially complete.

My case is more unusual then others because I didn't have any symptoms to start with, we initially only had an MRI that was done for a whole different reason to go off of. Most people are diagnosed within months, not years. Some get to have misdiagnosis's that have quick fixes and then their lives go on like it was just a bad dream.

After the initial diagnosis the MS Society of Canada connected with me and talked to me about how it will affect my life and how it generally affects the lives of those around me. I was told that diagnosis can actually cause grief, along with the five stages that come with it. They say that people often mourn the life they expected to have before coming to terms with how their life is now. It's 2018 and I still haven't finished the five stages. I never accepted that this is how life will be. I got scared too. The MS Society likes to talk about support systems, both medical and personal. I've never been close with any of my family, I left home at 15, only really connected with my family again in 2009. I don't have any friends from childhood. My longest friendship right now is from grade 9 and we didn't talk for almost ten years.

I was so afraid that I did everything I could to not feel my symptoms, I tried to hide them from myself. I was never a "pill popper" but I took as much medicine as I could to cover up what was wrong. It was my coping mechanism. It never occurred to me that I was probably hurting myself more than helping. As stupid as it sounds I went into remission, at the same time I was worried about hiding my symptoms, shortly after diagnosis until summer 2016.

I believe it was stress that brought it out of remission, the smallest things can do it. I had stopped treatment in summer 2015, after it was decided that the risks of taking the meds was worse than just not being treated for the time being. After my relapse I restarted treatment and it was not working, my MS was worse. In 2016, I decided to make chili for my dad's birthday. A few days before his birthday I had another symptom come out of nowhere. My sense of taste was gone! I could barely feel anything in my mouth and I could taste NOTHING!

Before all of this happened I had finally decided what I wanted to do with my life. I wanted to be a chef, a professional, not just a line cook. I wanted a career. How can I be a chef if I can't taste anything? A professional tastes the food they cook before letting a costumer anywhere near it. No professional lets their dishes go out if they don't taste like perfection. I don't always have no sense of taste but my neurologist showed me the exact lesion in my brain that is causing it and it hasn't gone away in two years!

I am on a new treatment, it's more invasive, they call it a second line disease modifying drug, because none of the first line options have helped and it seems to be getting worse faster. Of all the new options I chose this one because of the 75 percent success rate for patients to have no new relapses and no new symptoms. It can often give the body time to heal the damage done to the nerves. The best part of the new treatment is no daily, weekly or monthly needles or pills! The downside is that it destroys the part of your immune system that attacks your body, it's also the part of your immune system that protects you from the common cold, the flu and basically any illness that can make you sick. It's a really low dose of a chemotherapy drug, normally used at high doses for leukemia. The risks are high but the outcome can be better. I have about fvie years of monthly blood tests to look forward to. It's the whole, 'do the benefits outweigh the risks idea.' It might be worth it.

It's still got a vise grip on me both mentally and physically. Until I can find a purpose again...I don't have MS, MS has me...