The moment the doctor said “there is an abnormality on the MRI” my world stopped for a split second. He started to turn around and was pointing to the back of his neck. I stopped him and said “wait, did you say abnormality?” The next words out of his mouth were “there is a demyelination on the c spine, which is indicative of MS but not conclusive.” My next words were strong and harsh. It’s indicative but not conclusive? So why would you say that to me? Why would you put that worry in my head if it’s not a firm diagnosis? What are our next steps?
It was 10pm, I had been in the emergency room for 12 hours. I had barely had anything to eat. I had been hooked up to an IV that was painful and had to sit in horribly hard chairs in the yellow area waiting room of North York hospital. The chairs made my symptoms worse and I just wanted my bed. But let me back up to the beginning of what is called an “episode”.
I woke up Tuesday, Nov 25 with numb, tingling fingers in my right hand. I thought I had slept funny on my arm and they were simply asleep. I packed my gym & food bag and headed off to the gym. I went through a back workout, stretched, foam rolled and acu balled my scapula & traps thinking I had a pinched nerve somewhere in my neck. Throughout the day my upper torso (major pec/boob) went numb and then my abs & back (all on my right side). I made a massage appt for Thurs night hoping my RMT could get rid of the pinched nerve. Friday I woke up and nothing had changed except now my right glute had gone numb too. A coworker suggested I go see a nearby chiropractor. I saw him Friday afternoon and after a series of neuro tests (pin & dull pricks, body motions, reflexes & vibration tests) he urged me to go to a walk in clinic for blood work and x rays. He was hesitant to do an adjustment on me without full knowledge of what was going on internally. We also discussed my family history of MS (my father has it) so I immediately ran to the closest walk in clinic to get blood work done & get an x ray requisition. The xray clinic had already closed so I would wait out the weekend and go Monday. When I woke up on Monday my right leg & foot had gone numb so I just decided to get myself to the hospital where they had specialists and diagnostic tests at their fingertips.
So MS was always at the back of my mind but I was keeping an open and clear head and just seeking an actual diagnosis. I didn’t google my symptoms. I texted my dad about them but I went to the hospital to rationally solve the mystery. Monday morning I had a CAT scan. The on call emergency doctor after seeing that it was negative was about to send me home until I urged him to get to the bottom of it. He sent me off for an MRI. I don’t think I would have been diagnosed unless I had urged the doctor to dig deeper. I am certainly beyond grateful that I live in a country where my health care is free. Where I can walk into a hospital and have expensive tests at the disposal of the doctors. I’m also tenacious enough to continue to request help.
After the MRI results came back I waited another 4 hours. I asked to be unhooked from my IV so I could jail break from the emergency room and run to Tim Hortons in the hospital for food. I was starved and cranky. I finally saw an Internist. This is the doctor who’s words “you potentially have MS” rocked me. The doctor for sure paused for effect and waited for me to cry. So I did, like a good dramatic patient. Silent tears ran down my face. However my diagnosis still wasn’t conclusive. He wanted me to stay overnight for more tests so I agreed. I was put on a gurney in the hallway by the security guards and a room with a drug addict coming off a high. The night was off to a great start. I was alone and scared. I started madly texting my friends for support. I had gone the whole day being an Alpha Female and then you realize you just need your people.
My friend Katie came to my rescue with contact solution & a case so I could take out my contacts which had dried to my eyes while crying, granola bars and a vitamin water which I chugged at 3 am! We hugged, cried really quickly and then began talking about boys in front of 5 security guards that were definitely listening. How to cope with bad news 101 by Robyn & Katie. A tech then rolled my bed off to a different section of the ER while I sat crossed legged and started singing “I can show you the world” and said “thank you for my magic carpet ride!” I like jokes in serious situations. Katie & I laughed a bit longer and then I sent her home to get a good night sleep for work. The highlight of my lonely overnight hallway stay under bright lights in a busy area by the nurse’s station was Neda the nurse. She comforted me as she could, took my vitals, found me jello and told me she’d be my family for the night. Despite lovely people I still proceeded to have a sleepless tear filled night. North York can you please invest in 3 ply tissue because your quick wipes did a number on my face and I was a swollen dry skin mess in the morning. I requested an ice pack to unswell the eyes because really I was more worried about Dr. Mc Dreamy walking by and seeing my swollen face. All of a sudden I heard “Here I brought you a snack”. I thought my lovely nurse was even more lovely until my friend Emily came into sight in my peripherals and I laughed, cried and hugged her. She had brought me a healthy smoothie complete with kale that got stuck in my teeth for Dr. Mc Dreamy to see later.
I was rolled to the MRI at 9:30 for my second MRI. I know I’m beyond lucky to have received this. This time they did my head & neck and inserted a tracing agent into my bloodstream. I came out of that MRI tunnel rocked with a massive migraine. That machine vibrates & emits high pitched noises and just decided to rock my sleepless head hard. I was wheeled down the hall crying from excruciating pain to find my sister love Aubrie, who was dressed to the nines, holding tea for me. We sat, cried, laughed, she marched off to bed control to demand a room and came back to hear a doctor say “Is Robyn Baldwin back?” My hand shot up, we whipped our heads around to see a short doctor with a bowtie on. Aubrie yelled “BOWTIE” and he walked over while we giggled our heads off. I will give myself credit for always finding the fun in any situation. He examined me in the hallway but was nice enough to ask a nurse to put me in an examination room so I was no longer in the hallway for my diagnosis. I was also seen by a primary care physician resident who explain potential treatment and the neurologist came back in to give me the full diagnosis.
I have an inflammation on the C4-C5 of my spine & several spots in my brain (over 20 according to the formal report) and based on all these spots & my episode symptoms he can conclude that I have MS. I didn’t cry. Ok maybe one single tear. I asked calm questions. I found out the course of immediate treatment, asked about side effects and talked about follow up appointments. Aubrie found my mom who had driven from Ottawa that morning coming into the emergency room. They opened the door and I saw my mom and said all choked up “Mommy I have MS” and started crying again. But that was the last time I cried. It was time to buck up and deal with this shit. I still haven’t had a good cry. I thought the non stop tear filled night on the gurney was enough of a pity party. I had to buck up and deal with this shiat.
They wheeled me upstairs to a semi private room, I met three different nurses. They finally landed on a perky nurse because the serious Russian one and I just didn’t get each other. She just wouldn’t laugh at my jokes. Aubrie went to Tims to grab food for us and we got a little giddy about donuts. I met with the primary care physician & his resident (who had seen me downstairs in the ER). He explained I could leave the hospital and sleep in my own bed tonight after my first steroid IV treatment. They would arrange for an in home care nurse to come to me for the next two days. My friend Chivon arrived with moisturizer for my dried up face, green juice & a salad. Do my friends know me or what? I got my first steroid IV treatment to attack my immune system, put on my clothes and my mom and I left the hospital to get to the comforts of my condo.
That is the 48 hours all encompassing. I learned that I’m thankful I have the tenacity to know something was wrong and seek the best help I could get. I’m beyond grateful for my friends in person & on social media. It really is lonely in a hospital and despite me being an independent female having 4 friends keep me busy, share laughs and bring me simple things were beyond heart warming and I owe these ladies alot. For my mother, who at a moment’s notice will always rush to my side and for a social media world that as I shared bits and pieces of my journey gave me encouraging words and then have now flooded my walls, picture comments & sent me hundreds of private messages. I cherish every single one of them and can’t wait to return each one.
I am now an MS Warrior. I have been diagnosed but this isn’t the verdict of what my life will become. I need to get rid of this pesky numb right body and then attack how I am going to treat this disease going forward. This is now a part of me but I will not let it define me or be how I introduce myself to the world. I’m glad I can now connect with a new community of those living with the disease because that is what I intend to do live the fuck (sorry mom when you read this) out of life just as I always have but with a renewed vigour. I’m going to live with this as my sidekick. Some days it may get the best of me but I’m way too Alpha to let this be something that drags me down from living this epic life that I love.
If you’ve made it this far. Thank you for reading my story and supporting me.
14 thoughts on “Diagnosed with Multiple Sclerosis”
You got this girl! This is a tough diagnosis and now it is part of your life. But it is not ALL of your life. You will learn. You will grow. And there will come a time that you will be grateful for this journey (as werid as it sounds now).
I am so inspired by your graceful response to this. You are incredible. xo
Beautiful Robyn … You have been in my heart and mind for days. I got angry at the world for you and I questioned why this happened to such an amazing woman but then I looked at all of your posts and comments and realized this is just a blip on your amazing journey and is only going to feul you even more to be an inspiration to this world. You are truly amazing … I truly feel blessed to have connected with you xoxo
Thanks for sharing Robyn.
Robyn thanks for sharing! You are a warrior and Nothing or nobody can take that away from you. Be strong – call when you need to laugh, cry and laugh!
You inspire me 🙂 The verdict is already being denied.
I cried reading this. Totally not going to lie. You’re honestly one of the toughest chicks I know (like seriously – who else do I know who runs, mentor runners, does trail races, AND obstacle races all while hitting the gym?) and I admire your strength – the way you pulled yourself out of the mindset is not letting the diagnosis define you. xoxoxoxoxo girl.
Robyn. You are an inspiration and you have got this!!
I was shocked & devastated to learn about this via your Instagram – I’m so sorry you’re going through this Robyn, but at the same time, if anyone can handle THIS, it’s you.
I’m so sorry that this is your diagnosis, but I’m also glad you stuck with it and were able to get a diagnosis. I love your attitude about this and I love how matter-of-fact you are that you won’t let this define you.
As I said in my email to you…u r strong and fit and that can only help,you fight and from what I know of you thru social media you don’t seem like the kind of person who will define herself by this disease. I can’t wait to meet you in person soon! Hugs to you. And good on you for not ignoring any signs and getting a dx and rx so early in the process . You have to be an advocate for your own health.
Hi Robyn – I read every single word. Thanks for sharing your story. After some health issues on my own end this past year, I can certainly relate. I am thankful that you have a diagnosis, even though it means having something to diagnose in the first place. I thought of your dad, immediately, and am thankful that you’ll have someone close to you who can relate. I know you are a fighter, but that you also allow yourself to be vulnerable and I love this about you! xo Megs