How my MS journey began

My MS journey began on the 9th of November 2018, and at that time I had no clue what was going on or what kind of hell hole I was about to find myself in.

It all started with some numbness in my left leg, I didn’t think much of it and went about my day as usual. The day after the numbness had spread to my left hip which I thought was a little strange. I had never experienced numbness in that particular spot before. Actually, the word “numbness” doesn’t really explain how it feels very well for people who haven’t experienced it. It’s more like a loss of feeling, you can’t feel temperatures very well, combined with a tingling sensation and degraded feeling to touch. It kinda feels like you are carrying around dead meat outside your body, or fat in my case..

The very next day the numbness had spread to both my hands, which I will admit was a little scary. But since I’m an eternal optimist, I said to myself: “Now it will feel like I’m getting a hand job from a stranger when I do my business”, which is great or so I’ve heard! When I woke up the following morning, which was a Monday, I quickly ran to the bathroom as I always do to get ready for work. When I stepped into the shower and turned the water on I initially thought there was something wrong with the water pressure, no water was coming out, or so I thought. It took me a couple of seconds to realize the water was indeed flowing, I just couldn’t feel it on my body. This is when I realized the numbness had spread to the front of my upper body, both legs and arms.

I needed to go see my general practitioner.

Man checking blood pressure at his general practitioner.

A few days went by before I had my appointment with my GP, in the meantime my symptoms had become worse. I had gotten something called Lhermitte’s sign, which is a typical symptom of those affected with multiple sclerosis. This symptom has its name from Jean Lhermitte, a French neurologist who published an article on the subject making it known worldwide, however, he was not the one who discovered it. Anyway, the symptom causes the feeling of an electrical jolt running through your spinal cord and into your limbs, when you bend your neck forward. It feels like there is a zipper attached to your spinal cord, that is being unzipped fast down your spine. This feeling can be compared to the kind of electrical shock feeling you get when you hit your elbow, or the so-called “funny bone“.

In addition to this electrifying symptom, my hands felt very cold and my fingers were stiff especially the pinky and ring finger. My fingers had also become hypersensitive to touch, it was painful to touch things. Because I’m an IT consultant these new symptoms gave me some trouble at work, it was now painful to type on the keyboard and I kept making typo’s because I could no longer feel the keys on the keyboard. This was very frustrating for me since I’m used to typing without looking at the keyboard. I also couldn’t hold the computer mouse very well and it was seriously uncomfortable to drag my hand across the mouse pad as it felt like dragging my hand across sandpaper.

My hand grip had also become very weak, I was unable to hang from a pole with just my body weight. And I was struggling with using cutlery when eating. Using a pizza cutter was impossible, I had to use scissors with both my hands to pull off slicing a pizza!

When I explained my symptoms to my GP, he quickly made me a reference to get an MRI. Instead of waiting in the public health care queue I went to a private clinic and got the MRI done. I actually got an appointment for MRI the very same day I called them. I was eager to get this MRI done as fast as possible because I was already convinced I had multiple sclerosis, and after doing a lot of research I knew the importance of getting diagnosed early, to be able to start treatment as soon as possible to try and avoid any further damage to my central nervous system.

MRI image of a lesion in my neck.

Before I left the private clinic I got the medical secretary to burn me a CD with the MRI images so I could have a look at them myself while I was waiting for a radiologist to analyze the images and give me the official results. Obviously, as an IT consultant, I have no experience or training in analyzing MRI images, but it’s amazing what you can learn when you have access to the Internet and know how to use it to obtain information. As you can see in the image above I was able to locate a white spot in my spinal cord, that stood out in contrast to the rest of the nerve, which I thought was suspicious. This further increased my conviction of being hit by MS. A couple of days later the results were in, and the radiologist had found the same spot in the spinal cord in addition to some small spots that could indicate demyelination in my brain and CNS.

After discussing these results with my GP we agreed that the next step would be to do a lumbar puncture to collect cerebrospinal fluid from the CNS for diagnostic testing.

I will cover how this went down in my next blog post.

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