Living with Multiple Sclerosis

How It Started

Last year in June I was formally diagnosed with Multiple Sclerosis. March is Multiple Sclerosis Awareness Month, even though I was just recently diagnosed I wanted to share my experience leading up to my diagnosis as well as what it's been like after being diagnosed. Let's start from the beginning.

Around October of 2018, I lost vision in my right eye. When it happened I didn't panic. I thought it was just something that would pass. I still could see enough to get around. However, I noticed that it hadn't come back weeks later. I made an appointment to be seen at my local eye care center. I was seen by an ophthalmologist. I spent countless hours of the course of a few days that consisted of the doctor asking me numerous questions, diluting my eyes, and doing various tests including bloodwork to find out why my vision was gone. I was finally told that I had inflammation in the back of my right eye and that was more than likely causing my vision loss. I was advised that I would need to go to the ER and get steroid injections over 4 days. I was told there was a chance that my vision in my right eye wouldn't come completely back as well. I was also referred out to be seen by a rheumatologist as well as scheduled to have an MRI completed. 

This was only the beginning...

After getting the steroid injections I was told that I had to ween myself off so that my body wouldn't become addicted. I had to take steroids in pill form to do this. I am grateful I had absolutely no side effects. After visiting with the rheumatologist they weren't able to find anything alarming. I got my first MRI done and if I had to use a word to describe the experience it would be, uncomfortable. If you've never had an MRI I pray you never have to get one. Laying on my back for what seemed like hours while having to listen to the noise of the machine all while trying to drown it out with music from headphones. It wasn't the best experience. After my testing, I had to go to a doctor in Easton to discuss the result of my MRI. I met with the doctor at the facility in Easton, in which I was told that I had gray matter on my brain and that wasn't a good thing. I was asked my age and if Multiple Sclerosis ran in my family, in which I responded 27 at the time and that MS didn't run in my family. The doctor requested that I have a spinal tap done at my local ER, and to schedule an appointment at UMMC for a second opinion. 

It was my first time getting a spinal tap and I was terrified of having the procedure. I still remember the nurse that held my hand while I laid on the table, back up. In the middle of the procedure, I felt a pain shoot through one of my legs. All I could remember is praying to ask God to not allow anything to go wrong. The fluid came back clear, which was a good thing. However, I found myself right back in the ER after experiencing headaches and throwing up due to the procedure. I remember the doctors explaining that this could happen and that they would just have to take some blood and closed the hole up in my back which would cause the symptoms to reside. It did. 

I ended up scheduling with John Hopkins due to UMMC's unprofessionalism. On June 17, 2020, I was told that I had a form of MS called Clinically Isolated Syndrome. From my understanding, CIS was diagnosed due to the flare-up I had which was losing my vision, and then my brain scans showing gray matter and lesions on my brain. Outside of these, I had no other symptoms. My neurologist was very knowledgeable and expressed the best treatment options for me especially being so young. I started my self-administered injections in July. My injections are 3x a week. 

Living with Multiple Sclerosis

My therapist asked me how I had been managing with my new normal. I expressed that the biggest thing I've had to get used to is not being able to GO, GO, GO. If anyone knows me I am always on the move doing something. However, this diagnosis has symptoms of chronic fatigue and boy is it heavy. I can be completely fine one second and the next it hit me like a pound of bricks, to where I can't do anything but sleep. With this, I have learned to be patient with myself. My mental concentration isn't as it once was, but I have been managing since I've learned about time-blocking to get things done.

A few things that keep me going are exercising which is highly recommended when you have MS. I've recently gotten back into running and I love it. It lifts mental fatigue. I have also started getting monthly massages to help with any tension in my back. If you are like me I carry stress in my back and shoulders and after a while it becomes heavy. I have also changed my diet. I am currently a pescatarian and hoping to be completely vegan by the end of this year. We all know our diet plays a huge role in a lot of illnesses.

By the way, before I was diagnosed I was completely healthy physically. However, mentally I was stressed a lot. I internalized a lot. Now MS isn't 100% linked to stress, but some studies have been shown that it is linked to stress somehow. I'm not saying this is why I have MS. What I am saying is that it's important in knowing the difference between healthy stress and an unhealthy amount of stress and how to effectively manage it. 

Overall, life with MS isn't the end of living. If anything I have learned to live each day to the fullest and embrace each experience as if it is my last.

Feel free to leave a comment if this blog post resonates or to even leave some words of encouragement for anyone struggling with a chronic illness.


Share this post

Leave a comment