Suck It MS!
Happy 10th Anniversary to me! This year marks Ten years since my official MS diagnosis. Ten years of winning this battle against Multiple Sclerosis.
Now, don’t get me wrong… you’re never really “winning” against this chronic disease for which there is no cure – your only objective is to keep your mobility, cognitive function, and stay above ground for as long as possible. So, in that regard, I am a winner.
The month of March of MS Awareness month. It’s also International Women’s Day today. Since I consider myself a badass woman and MS Warrior, today is as good a day as any to celebrate kicking MS’s ass for a decade. #suckitMS. Here’s some facts:
MS Fact #1: Nearly 1 million people in the US are living with MS
MS fact #2: 3x more women than men are diagnosed with MS and generally, people (men and women) are diagnosed between the ages of 18-45.
MS Fact #3: MS is a chronic condition – meaning it’s long lasting and there is no cure.
MS Fact #4: MS can be a challenge to diagnose. Symptoms and single tests may not be enough because MS symptoms mimic a lot of other conditions.
MS fact #5: The damage MS does to your nerves can also affect your critical thinking and other cognitive (mental) skills. It’s not uncommon for people with MS to have problems with memory and finding the right words to express themselves. Some symptoms of this include
- the inability to concentrate or pay attention
- impaired problem-solving skills
- trouble with spatial relations (knowing where your body is in space)
- Cognitive problems can sometimes lead to frustration, depression, and anger
MS fact #6: MS is labeled as a “silent disease” or an “invisible illness.” Many people with MS look no different from someone without it because some of the symptoms, such as blurred vision, sensory problems, and chronic pain, aren’t visible. However, someone with MS may need special accommodations even though they don’t have mobility issues and seem fine.
MS is also called a silent disease because even during remission, the disease still progresses. This is sometimes referred to as the “silent progression” of MS.
So as I sit here getting my first dose of my new “juice,” aka- Orcrevus, I reflect on this journey. I’ll have 9 hours here to do this, so thanks for reading if you’re still here.
Ten years ago, I pushed my doctor for a diagnosis. I was running a lot a was considered very healthy by my doctor, but I knew something was wrong. I insisted on being tested for MS after reading online about the symptoms. My primary doctor was dismissive and thought maybe I had Lyme disease. I decided to go to a neurologist on my own.
Not long after, I was diagnosed. I spent 8+ years injecting myself almost daily with my first medication, Copaxone. It worked, no new lesions and no relapses. I got tired of that because I started to find hard lumps that hurt and left marks at the injection site, so I decided to switch medications. The Copaxone medication is a “baby” DMT- meaning, not as effective as others, but also less side- effects.
It was scary to switch because why quit on something that was WORKING! Nowadays physicians start newly diagnosed patients on the strongest medications available, however with that, comes stronger and more risky side-effects. I switched to an infusion called Tysabri, which is administered every 28 days via IV for about three hours. Ahhh…the good stuff.
Others in my MS community raved how good it made them feel. The catch- you cannot test positive for this very common virus called JCV. Most don’t know they have it and there are no symptoms, but the virus could cause a reaction with the medication causing another terrible disease called PML. PML can be deadly within three months (survival rate is 75%), but
it also has other debilitating affects… Google it, it’s not something you want to roll the dice against.
So after a year of Tysabri, I tested positive for JCV. What the heck? Why now? It lives dormant in your system. My doctor tried some mediating strategies to keep me on it- mainly spreading the length of infusion from 4 weeks to 6, but at each check up, my virus numbers kept increasing. I wasn’t risking the 3% chance of getting PML. As the Huey Lewis song goes, “I want a new drug.”
So here I am (I get my infusions in a cancer center) doped up on Tylenol, Pepcid, Benadryl, Zyrtec, Saline, and Solumedrol (a steriod) before they can even give me the Orcrevus (new meds). Benadryl to prevent an allergy, Tylenol to prevent a spike in temperature, Pepcid to prevent nausea, and Zyrtec to prevent an allergic reaction that isn’t covered by Benadryl.
How many allergic reactions do they expect?
Before I doze off from the meds and continue on this all-day journey (yes, I will spend 9 hours here undergoing treatment) I wanted to say again say, Suck It MS, I’ve got this! Oh, and here’s to strong women everywhere!
Thank you for taking the time to read and educate yourself. This is honestly my way of journaling the experience and hopefully help others who may be living with this disease.
DB, thank you for your kind words. We’ve got this! And to EP and others battling this terrible disease, stay strong. We are in fact, badass women to be celebrated today and every day.
We’ve got this. Learn more at the National MS Society.