Rhode Island, USA
When were you diagnosed with MS? September 2021
What type of MS do you have? Relapsing-Remitting MS (RRMS)
#1: Can you tell us a little about your journey with MS. How did you feel about your initial diagnosis and how it has affected your life?
August 2021, that's when my whole life changed. Things I’ve dreamed about and worked my entire life for were now shattered. It all started with a shot mandate. That same mandate was publicized on the news threatening loss of employment, if you didn’t comply, causing fear and stress. Ever since I was 10, I've always known what I wanted to do for a career. I also own a home and have bills to pay, so out of fear, I went and got the first dose. Two days later, I started to experience pins and needles in my hands and feet and then they went numb. I then started feeling lightheaded on the fourth day and on the fifth day, while driving to work, I went to merge onto the highway. I turned to look over my left shoulder and couldn’t see, everything was black?? I managed to make it off the highway to our parking lot. When I got out of my car, I had vertigo and almost fell down, I had extreme pressure behind the back of my eyes, pain in the back of my head, my arms and legs started to feel numb and I had a weird pain around my ribs which, I later found out was the MS hug. I then left and went to the hospital. Between the wait to be seen and having tests run, I spent 10 hours in the ER. They couldn’t tell me what was wrong with me and suggested I go see my primary doctor and a neurologist. The next day, I went to see my primary, who put me on a 6-pack of steroids which eventually helped me regain my frontal vision. However, the peripheral vision didn’t come back fully for weeks. He referred me to a Neurologist who then sent me for a brain and spine MRI. A day or two after the brain MRI, my primary called and asked me to come in immediately. I was told I had two lesions on my brain and an active one showing in my neck (C2/3). I was then diagnosed with Multiple Sclerosis (9/24/21). I went for the spine MRIs and had a second lesion in my neck area. (C4). I went back to the Neurologist who said he was referring me to an MS specialist in Massachusetts and he wanted me to go for 5 days of IV steroids (1,000mg Solumedrol IV a day) to try and stop the active lesions from progressing. I was told because of my age, the areas, and the number of lesions I had, that this was my first flare and my MS was aggressive. During this time I also underwent a nerve test on my legs and feet, because of the numbness and tingling. My big nerves weren’t damaged. However, he questioned whether I had small fiber neuropathy.
While it was still controversial at the time, both my primary and the first neurologist believed, and still do, that the shot caused the flare-up of the MS in my body. During this time I was permanently exempt from any further doses due to my response being considered “a type 1 reaction" due to an onset of a demyelination disease consistent with Multiple Sclerosis”. I had never been doctored on or had symptoms prior to the shot. It was also very stressful trying to explain to everyone that the shot caused this because, no one wanted to believe that it was true. But, other vaccines in the past have always had people who developed autoimmune, neuropathy, etc. So why would this be any different? The most aggravating part was getting anyone to believe that this is what really happened. But I’m sure in the years to come you’ll see a commercial to call 1-800……. If you have been a victim of a Covid shot. I then met my MS specialist in November and was officially diagnosed with RRMS. He also believed my diagnosis was a reaction that came from the shot and he filled out VAERS paperwork for the CDC. VAERS is a national vaccine safety surveillance program overseen by CDC and FDA. VAERS collects and analyzes reports of adverse events that happen after vaccination. We then had to go over my treatment options and believe me, it was as easy as you would think. You have to be tested for all different genes, one being something called “JCV antibodies”, which I was positive for. This along with my family history, limited the options I had for treatment. I came to the decision that I wanted to go on the strongest drug, Ocrevus, since my condition was already labeled aggressive. Well, Blue Cross hit me with two denials. The third time, which I was told was our last chance, my doctor had to write a letter describing why I needed this treatment and why I wasn’t a candidate for the others and we finally got an approval right before Christmas.
I started writing my blog because, it has helped me explain to others what it is like to live with an invisible Illness. I started a blog page on Instagram in October 2021 (@Msflarefighter). It helps to connect with others who are in similar situations like me; but, to also educate others who don’t know much about MS. Just because we look fine and are smiling doesn’t mean that we aren’t in pain. I constantly get told “you look good” which is nice to hear but in reality, I don’t feel good. Just because, I was able to do something yesterday doesn’t mean I’ll be able to do it today. Living with a chronic illness means you wake up each day not knowing how you’ll feel. It also doesn’t mean we will “get better”. Instead, we learn ways to cope with it and better ways to conserve but, also use our energy. Your life will never go back to what it once was and you grieve losing that life. This diagnosis made me lose a lot, everything I’ve wanted or planned for my future has been taken away from me. You eventually have to accept it and adjust to the “new normal” feeling of pain and exhaustion that you’ll live with daily. While the symptoms that last longer than 6 months you’re permanently stuck with, all they can do is give you things to help with the pain to make you more comfortable. But, those same meds come with a level of fatigue and their own side effects.
It has been about a year and a half since I’ve been diagnosed and during that time I’ve been also diagnosed with Erythromelalgia, Rheumatoid Arthritis in my hands, and Osteo Arthritis in my lumbar spine. I’m still working on getting my perfect “cocktail” of medications and finding what works best for my treatment but in retrospect, I’ve come a long way.
#2: What MS symptoms do you have and how do you manage them on a daily basis?
Currently, I have numb fingertips, brain fog, fatigue, memory problems, issues finding the right words or blending words, headaches, migraines, neck pain, lower back pain, and my right foot burns randomly. I get Botox every three months for the headaches/migraines. I also get Botox in my neck, in the trigger point muscles to help the spasticity in my neck. I face difficulties picking up objects due to numbness in my fingertips, and my Rheumatoid Arthritis flares up when I use my hands repeatedly, causing problems with tasks such as opening jars etc. During warmer weather, my Erythromelalgia flares up, causing my hands to turn bright red and experience a burning sensation. I have a container of fish tank rocks I keep in my fridge that I use to cool down my hands when they swell or begin burning. I work out daily, doing cardio and strength training. If I’m having a ‘bad’ day, I may skip my normal workout but, I will still do a walk or a yoga class. On the days I don’t work out, it's because I feel stiff and uncomfortable. I always have a heating pad nearby for my neck and back and I also use Releafpack ice packs for my head when I have a headache. While I am prescribed a lot of medication, I also have a gluten allergy. As a result, I am on a gluten-free diet and I try to eat as healthy as I can.
#3: Who/What has been your most important support system?
My family has been my biggest support system. Both my parents come to all of my appointments and when I get my Ocrevus infusions, my parents drop me off and stay in the area in case I have a reaction. That’s usually about 5 hours. Then that same night my mom will stay over at my house to make sure, I’m ok and that I don’t have any reactions. When I was first diagnosed, I was in a lot of pain and I was depressed. There were days that I didn’t move from the couch. My mom would come over and just sit on the couch and watch tv with me. As I’ve gotten used to my ‘new normal’ my mom will come over and do yoga with me or walk with me.
#4: Do you use any accessories like canes, walkers, or wheelchairs to manage daily activities?
No, I do not.
#5: How do you stay positive and motivated in your daily life? What do you do for self-care?
I try to keep a positive mindset and avoid dwelling on negativity. I make a conscious effort to let go of things that are beyond my control. I have a set routine for my self-care. I get up daily at 6:30 am and work out every day. I make sure I get a minimum of 7 hours of sleep each night. I also read every day, usually before bed. If I deviate from this routine I usually don’t have a ‘good day’. In the warmer weather I like to, in moderation, putter in my garden or lay by the pool with a good book.
#6: Your story and experiences with MS are incredibly valuable and can provide encouragement and motivation to others in the community. What words of advice or encouragement would you give to someone who is newly diagnosed with MS or going through a challenging time right now?
I would tell them that MS is not a death sentence and that although it sounds scary and you’re in pain, it will get better in time. You will learn how to live with it and it will become your ‘new normal’. You also have to allow yourself to grieve your old life; because for me, I was in denial for a while hoping, that I could still live my current life. That was the hardest pill to swallow. You need to let go of things you cannot control and focus on the things you can. You may not be able to do the things you once enjoyed but, you will find new things that you enjoy that may surprise you. But most of all, just try and stay as positive as you can!
#7: Have you started a business or mission related to MS? Can you tell us about it and what inspired you to take this step?
No, not at this time.
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