At the ripe old age of 21 I noticed the left side of my forehead was numb. Not the kind of numb where if someone were to stab me in the face I would feel nothing, more so the tingly kind of numb that we all experience when our foot falls asleep. Like many, my first thought wasn’t, “Hey! Something serious is wrong.” Rather my mind was more along the lines of, “That can’t be right, maybe it’ll feel normal if I touch it again … nope. How about now?”
The numbness lasted for several days, so my primary physician referred me to a jack-ass of a neurologist, a man with zero social skills and not an ounce of empathy, but at least he sent me off to have my first of many-many-many MRIs.
Here’s what I was told before going into the giant tube, “It might be Multiple Sclerosis, or it might be a severe migraine,” you can guess which one I was hoping for. But alas, it wasn’t a migraine. And as my robot doctor proceeded to tell me all about my disease, with all the medical jargon he could muster, I fell into shock as my world went silent.
Its been roughly 5 years since that terrible day, and now I’m living a very happy life. Being forced to be so aware of my mortality at a young age has given me a thirst for life. It’s made me more actively seek out the activities that make me happy, people who are on fire just to be alive, and not limit myself because I have a condition. But it took me awhile to get to this point, so if you or someone you love is still struggling, please be patient and/or offer support.
Here’s what no one tells you when you’re diagnosed with MS.
- People say the worst possible things:
The most common thing I hear when I tell someone that I have MS is, “Oh my friend/parent/aunt/etc has MS, he/she is in a wheel chair now.” Other common variations include details about how their loved one is in too much pain to do anything or that they lost their vision. Sometimes they confuse Multiple Sclerosis with Muscular Dystrophy and look at me with curious eyes.
A lot of people will assume that any and every health issue I have is MS related. They mean well, but their ignorance does drive me crazy. I’ve learned to calmly say, “No, this has nothing to do with my MS.”
- Don’t be afraid to fire your doctor:
My first doctor was terrible, so my family put our feelers out there and now I have this badass doctor. She’s personable, she’s intelligent, and she can rock a pair of combat boots. Find someone you’re comfortable with, don’t settle for who you’re initially referred to.
- Shock and depression is natural:
When I was first diagnosed I swear I could feel death creeping in through the cracks around my door. The truth is, when told you have MS (or any other disease) suddenly your mortality feels real. Not just in the “we all know we’re going to die someday” way, but in a way that forces you to acknowledge that your finish line may be sooner than you expected. What’s important is remembering that your life is not over, and if you need help – reach out.
- A lot of times it’s hard to tell if you’re having a symptom flare up, or if you’re just working yourself too hard. And if you have a new symptom, promptly tell your doctor.
For me, the most difficult symptom to decipher was fatigue. There’s a big difference between MS fatigue and just being sleepy. Since I was still in college at the time I just assumed I was tired from staying up late for school. But no matter how much sleep I got I was still constantly tired, which led to me becoming irritable and unpleasant to be around. Eventually, I told my MS doctor what was going on and she said that it was probably a new symptom so I should get an MRI to see if there are any changes. Which leads me to ….
- If a drug is not working, change it:
Initially I was on Copaxone, which is a daily injection. Giving myself a shot everyday was torture, made even worse when I tried to use the autoinject pen thing that was supposed to make the process easier. I would cry for an hour trying to will myself to push that damn button. And my MRI showed that it wasn’t working, in the year that I was on it, I had 4 new legions appear in my brain.
So I switched to Tysabri, which is much better for me mentally as it is a monthly infusion, and a nurse is there to hook me up to the IV. Since being on this drug I’ve had no new legions, and one of them actually got smaller.
Find the drug that works for you not just physically, but mentally as well.
- Be active:
My MS doctor loves that I’m active. That I dance. That I go to the gym. Remaining active is a huge factor in slowing MS down.
After the shell shocked part of being diagnosed, I had a whole new level of drive to dive head first into the dance scene. Maybe it was because everyone was telling me how they knew people who couldn’t walk anymore, or maybe it was because I had a new appreciation for my life. Either way, I wanted to dance my heart out for as long as I physically could.
Find an activity that you enjoy, whether that be dance, sports, hiking, or jazzercise. Just be sure to pay attention to your body, I’ve found that when symptoms start to flare up it’s usually because I’m pushing my body to hard. So I have to make sure that I’m being healthy, and giving my body rest when it needs it.
- You can live your life just as full as everyone else.