Alright. We can just cut straight to it and talk about what you’re probably thinking… “wtf does she mean by “previously healthy” what’s happened that I never heard about?!”
*disclaimer, be prepared for a long read*
Well my friends, on October 30th, 2018 I was diagnosed with Relapsing-Remitting Multiple Sclerosis. Scary isn’t it?
For those of you who don’t really know what Multiple Sclerosis is…. “MS is currently classified as an autoimmune disease of the central nervous system (brain, spinal cord). The disease attacks myelin, the protective covering of the nerves, causing inflammation and often damaging the myelin….” If you are more interested, you can head here https://mssociety.ca/about-ms/what-is-ms and read more about it.
Everyone’s experience with MS is very different. My journey to my diagnosis started October 31st, 2017. I woke up that morning and was unable to hear out of my right ear, literally at all. I was also living away from home at the time, which means I was living away from my family doctor so I only had access to clinics. I went to the clinic that day and the doctor told me that my eustachian tube was swollen shut due to either a pressure change or an allergy of some kind and there was nothing he could do for me and that it would go away on its own. One week later I was still unable to hear so I went back to the clinic and saw a different doctor and he essentially told me the same thing, so I felt a little discouraged. That night before I was going to bed, I was feeling a bit dizzy but I didn’t think too much about it because I thought I was just overtired and not feeling well, so I just went to bed. When I woke up the next morning, I couldn’t do anything except lay perfectly still in bed without feeling like everything about me was spinning and that I was going to fall over. I went to the clinic again and saw a third doctor and she told me there was nothing she could do, and that because my eustachian tube was swollen shut, the fluid in my ear had turned into a “sticky, glue like substance” and until that would essentially dissolve, I would be dizzy. I didn’t get the diagnosis of vertigo until after 2ish weeks of being dizzy, which she told me it is something that goes away on its own over time. It ended up not getting better that fast so I kept going back to the clinic and got prescribed an anti-vertigo medication to try and blood work to make sure there wasn’t something else going on that we couldn’t see, but all of that came back normal. I ended up having to take almost 5 weeks off of work and my vertigo lasted almost 7 weeks.
I moved back home at Christmas and saw my family doctor in January 2018 and she sent me to a ENT (ears, nose, and throat specialist) which I saw in February. I had my hearing checked at my first appointment and everything came back normal, and she couldn’t see anything in my ear. She then decided to send me for an MRI to check to see if I had any tumours in my ear that she just couldn’t see that could have caused me to be dizzy for that long… so at this point I’m freaking out because tumour is a scary word to hear, especially if it’s in your head. My MRI happened at the beginning of May. It was my first experience with anything like that, and it is a long process and a loud process despite the ear plugs they provide for you. AND you are not allowed to move which also poses as a struggle. I got the call back from my ENT that she had the results and wanted to see me (which she briefed I would see her if it was good or bad news). I go back and see her at the end of May and she only gets the radiologist report. She had it up on her computer screen and I was reading it faster than she was talking through it. I didn’t even register the part that said there was no signs of tumours but there were “white matter lesions on the scan that could indicate Multiple Sclerosis.” As soon as I read that sentence I immediately started to cry. She assured me that she did not believe what the radiologist had to say and that she was going to refer me to a neurologist. At this point, I was realizing my life was starting to turn into a Grey’s Anatomy episode.
So from that appointment with my ENT until I had my appointment with my neurologist in July, I would go back and forth telling myself that I was fine, and that I did not have MS to yes I did have it. Almost everyday I was constantly in my own head battling against myself and running myself down and panicking. I kept googling early signs and symptoms and psyching myself out about it, “there’s no way I have this, I don’t have any of these symptoms” to “maybe my legs do feel kind of numb sometimes, or maybe my fingers do feel tingly some days” back and forth. back. and. forth.
The day finally comes to go and meet my neurologist and get my results. My appointment was about 2.5 hours long and we went over my whole history and my story of how I got here. And then we look at my MRI scans (which was very cool but also scary) and I was told “at this moment in time, you do not have MS” I instantly started crying as it felt like I had a giant weight lifted off of my shoulders. I did have to spots on my scan, but there wasn’t enough evidence to prove that I had MS, especially since I haven’t had any “attacks” or signs or symptoms. So I left that appointment feeling better and letting my friends and family know the news I got. Everyone was happy for me.
My neurologist sent me for BUNCH of blood work and a referral to a rheumatologist to get tested for any and all other autoimmune diseases as well as another MRI for a repeat brain and my cervical and thoracic spine. All of my blood work for the other string of autoimmune disease came back negative, which was a relief so I just had to get my MRI. My second MRI was October 2nd, 2018. I was in the machine for an hour and 40 minutes. Now that is a long time to be left alone with your thoughts let me tell you. And then I just had to wait again to get my results. At this point, deep down I kept thinking about what my doctor said… “at THIS POINT in time I didn’t have it” I was never given a guarantee that I didn’t have it, or I would never get it.
I got my second appointment with my neurologist which was October 30th, 2018 and I went in thinking it was going to be the same as my last scan, or I even had the thought that maybe my scans were incorrect the first time and I was going to be okay. He pulls up my new scans and goes over them, and they show there are new spots on my brain from the scan that I had had in May, as well as a spot on my spine. The spot on my spine was the clear diagnosis that I did in fact have Multiple Sclerosis. Did I handle this news well? Absolutely not. Was everyone in my life shocked? Absolutely yes. No one saw this coming, especially given the fact that I show no real signs of the disease except for on my scans.
So yes, as my clinical notes say. “Nicole, a previously healthy 23 year old female.” This is my new story, and I’m starting this to create a way to share my experience with you.
I’m going to cut this off here since it is quite the long one, if you made it to the end I congratulate you.