Here’s my story for World MS Day
World Multiple Sclerosis Day (also known as World MS Day) is May 30, but sometimes in the United States it overlaps with the big Memorial Day weekend, like this year. Because of this, I felt it was important to talk about and share my story.
MS is a serious disease that is hard to understand for many who don't live it, especially since you usually can't tell if someone is diagnosed just by looking at them.
I wanted to bring awareness to this and try to share with you what it's like to live with this disease. And for those of you who also battle MS, I want you to know that you're not alone.
My first warning signs
My first symptoms manifested just after my twin sons were born. They were born on August 26, 2015, and my first symptoms arrived shortly after that.
The biggest sign for me was numb limbs after waking up. At the time, I didn't think too much into it. I mean, everyone falls asleep on their arm once in awhile, or sleep with their leg in an awkward position, and we all deal with that "pins and needles" sensation until the blood starts flowing again.
But this was different. I'd often deal with all four limbs doing this, even when I wasn't in any awkward position.
Since the boys were just born, my wife and I didn't really get much sleep, and sometimes we'd fall asleep on the couches just from pure exhaustion. So naturally, I was thinking it was due to that.
Symptoms continued to worsen
As time went by, symptoms progressively got worse. It eventually got to the point where I might go through a day without a leg or arm completely "waking up."
Thinking I might've just had a pinched nerve, I still didn't think too deeply into it. But it was starting to really effect me in terms of my mobility and ability to grip things with my hands. Still, I was able to continue through my day without too much inconvenience.
First relapse arrives
Then, around Christmas time in 2015, I had my first true MS relapse.
At first, my feet went almost completely numb and felt very heavy. Then, that sensation progressed up my legs up to my hips.
At the same time, what could most commonly feel like arthritis in the hands began to take hold. I couldn't really open my fingers or grip anything properly, and lost a good sense of overall feeling anything with my hands.
So much so, that I was still trying to do dishes one time and I sliced my finger on a knife and didn't even know it. It took the message that I cut myself around 5 to 10 seconds to eventually start registering in the brain. And even then, it didn't really feel like much.
I also needed help getting up from sitting as my mobility was really effected at that point. Even my arms went numb about half way up. The onset was quick, and I knew something was very wrong. Still, I had it in my mind that it was a severely pinched nerve so I didn't start seeking a neurologist.... yet.
Symptoms eventually subside
I still remember a holiday dinner we had very vividly.
We went out to eat with family, and my wife and I had the kids at one point sitting on our laps. I forget the reason why... I think it was because they were cranky and that was the only way we were able to keep them calm.
So I had one of my sons on my lap, and I have to tell you, if I didn't physically see him there, I would've never known it. I just couldn't feel him sitting there.
Eventually after the Christmas and New Year's season passed I started feeling better. First, my feet were finally able to feel again, then progressively everything else came back and I felt great once again.
In my mind, the nerve finally corrected itself and all was good again. We were now in January of 2016.
Another relapse arrives
Fast forward to March, and the symptoms manifested once again.
This time, however, they hit HARD! In addition to before, the numbness spread to areas of my body that previously weren't effected.
This time, I lost most feelings all the way through my legs and arms, I couldn't really use my hands, I needed help getting up and sitting down, and the numbness expanded all the way up my chest.
On top of that, it felt like someone had a large belt around my waste and it just felt like I was having the life squeezed out of me.
That relapse lasted a little longer than the first one, and it was crippling. It was then that I started taking this more seriously and spoke to my doctor, who recommended a great neurologist for me to see.
Over the next couple of months, I would have a series of tests run to determine exactly what was happening. As things such as pinched nerves and Lyme disease were ruled out, MS remained firmly on the table.
It wouldn't be until May of that year when the MRI scans would confirm that I had Relapsing-Remitting MS, or RRMS. From that point on, we worked aggressively to start treating it.
Then vs now
The diagnosis was back in 2016, and so far overall I've been doing pretty good. But I'm not taking that for granted as I've had rough days since, and I know it could strike very quickly at anytime.
I'm very thankful to have a great neurologist and doctor who make sure I'm always doing my best, as well as support from my family, friends, and employer. I don't think I'd be able to keep doing what I do without them.... both professionally, personally, and most importantly, as a dad.
What is MS?
Multiple sclerosis, or MS, is a disease of the central nervous system where your immune system starts attacking the myelin sheath, the outer layer what protects your central nervous system in the spinal chord and brain. Click here to learn more about this disease and how it affects an individual who has MS.
Currently there is no cure, but we're making progress and getting one step closer every day.
Types of MS
There are four main types of MS. The first is what's known as clinically isolated syndrome (CIS), followed by relapsing-remitting MS (RRMS), secondary progressive MS (SPMS), and primary progressive MS (PPMS).
Regardless of which type of MS someone is diagnosed with, symptoms can force you into a state of disability, so it's important not to judge anyone just because they look well. To learn more about all the different types of MS, click here.
Knowing someone with MS
It's easy to dismiss something is wrong, because MS is an invisible disease. So someone might look perfectly healthy to you and you might not understand the pain they're going through.
My advice to you: Please don't dismiss them as someone who just wants to complain or be lazy. It's very hard to describe the symptoms to someone who doesn't go through it, and everyone of our experiences will differ from one case to the next, depending on where the lesions formed.
In my case, symptoms often struck in the morning, but for someone else, it could be at any point in the day. Please don't dismiss them. It's hard enough to try and explain what we're going through in a way that'll help you understand.
If you have MS
I know, this isn't a club you signed up to be in. I didn't either, but here we are. I want you to know that it's OK for you to be frustrated. It sucks. There's no other real way to put it. But, you're not alone.
If you feel lost, or are frustrated because nobody seems to understand you, try becoming part of an online MS group. MS groups are a great place where you can share your experiences with others who also have MS and will understand what you're going through. We get it, we're living it too ad will have each others backs.
Listen to your body
Probably the most important lessons I've gained from this experience is to listen to my body. If I get the slightest hint that I might be overdoing it, I stop and rest.
Another thing for me that tends to aggravate symptoms is heat. I do much better when it's cooler out, so I try to plan anything I need to do outside during cooler parts of the day.
Another symptom that can strike is fatigue. If I'm doing something more physically demanding and I start getting tired or numb, it's due to the damage that exists within my brain and cervical spine (the cervical spine, or neck region, is where the majority of my damage is).
Any time my body gives me a sign that it's time to rest, I make sure I do it.
Support is always available
Whether you have MS, or know someone who does, it's important to know you have support. The National MS Society has many resources that can help you navigate through this, as well as ways you can get involved in the fight to help rid the world of MS forever.
Please feel free to share this article with everyone you know, and lets do our best to bring awareness and support for those dealing with MS... not just for World MS Day, but for everyday.