my diagnosis story

In the middle of October 2018, I woke up with something blurry in my right eye. I tried blinking it out, waiting it out, but nothing helped nothing made it go away. This blur obscured my peripheral vision which messed with my depth. There was also intense pain behind my eye every time I tried to look around. Especially looking side to side. It felt like a muscle was being pulled. I just wrote these weird incidences off as just that- weird. A few days later, symptoms hadn’t subsided so enough was enough, and I finally went to the ophthalmologist. At this point I was getting worried and mind you still visually impaired! Did optic neuritis/Multiple Sclerosis even cross my mind as a possibility- absolutely not.

Doc told me I was “clear to drive” “nothing looked wrong” I must be “fine” yeah ok... I was NOT okay to drive, thankfully I knew that and didn’t even risk it. Problems of living with an invisible illness amirite? *nervous laugh* A week later, my vision had not gotten better so I went to the hospital. They were my first mention of “optic neuritis” I didn’t know what they truly were referring to and they weren’t giving me straight answers. It was all up in the air. It felt like they were speaking in riddles- like they didn’t really know what to say. I was waiting for scan results, but I felt like I was getting the run around so I left. (I don’t advise this! Looking back I wish I stayed.) I had booked my neurologist appointment, and decided to take the outpatient route (which totally prolonged diagnosis and fed into my denial but here we are).

So in short, optic neuritis was my diagnosing symptom. It completely blindsided me (pun intended) I battled it for the rest of October and thankfully it went away just in time for me to celebrate my 25th birthday! But this birthday (much like my birthday the previous year- I’ll get into that another post) had a different vibe to it. I spent it with family and it was great, but in the back of my mind I just wanted to know what the heck that weird episode was. Unfortunately, the optic neuritis came back shortly after my birthday and I battled it throughout December. I dove deep into supplement research and started taking a few that I really think helped me and eventually it faded on its own! It was a small win.

In hindsight, in July ‘18 after my knee surgery, I developed a slight vibration down my spine. I took to the chiropractor who believed it was a pinched nerve so I let it be. I now know it’s referred to as Lhermitte’s sign which technically was my first “sign” of Multiple Sclerosis. Let it be known before that moment, I never felt any significant or insignificant multiple sclerosis symptoms! It makes me wonder if the inflammation from that knee surgery (from a year prior) stirred up my immune system… made it start firing off…

At this point, the neurologist I went to ordered a spine tap because the MRI results showed “white spots” (lesions) on my brain. Several. And there were some active ones. Now, did I have any clue what she was talking about? Not at all. And she never took the time to explain white spots, or what they meant. Instead, she told me she was going to order a lumbar puncture just to “rule out Multiple Sclerosis”. Sure, okay, so I do the spine tap to rule MS out- got it. Cool. I mean it can’t be whatever Multiple Sclerosis is… right? It’s just a test...

Man, was I not prepared for the results. You see by now, I knew, I knew, it wasn’t Multiple Sclerosis. I was positive. I mean I knew something was wrong, but not like that. I just thought I’d be told to change my diet, exercise more, etc. nothing could’ve prepared me for what came next.

After a fun spine tap adventure, I receive a call from my local pharmacy. It was the day before thanksgiving, and I’ll never forget this. The pharmacist called to tell me my Copaxone prescription needed authorization first before it could be filled. I didn’t know what she was talking about, so I told her I didn’t have a prescription for that. She proceeded to tell me it was from my neurologist and it’s a medication for Multiple Sclerosis… I was at a loss for words. I wasn’t even diagnosed yet. Why didn’t my doctor call me? Consult medication with me? What the actual eff. A flood of emotions came over me. I wanted to cry, scream, ask a million questions, breakdown, do nothing, all at the same time.

At that very moment, I was getting a call from my neuro office! My neurologist had her nurse call me to tell me verbatim, “the findings from your spine tap are consistent with Multiple Sclerosis” to which I still couldn’t wrap my head around wtf “MS” even was. So I asked what that meant, and all this lady said with the most nasty attitude was, “You. Have. Multiple. Sclerosis.” Pauses and everything. As if my question for further explanation insulted her personally. Bless her heart. All I could think was why didn’t my neuro call me herself, explain what MS is, discuss medication options with me, guide me at all?! Did she really think I was just going to blindly accept the medication she chose for me? I mean clearly she did. It makes me wonder how many other patients of hers she’s misguided. Diagnosis doesn’t have to be a wine and dine experience, but there should be at the very least explanation- a consultation. So that less people have to rely on google for telling them about their disease. Is that such a crazy concept? To just bring forth a little compassion for your patients.

I truly believe this shockingly mishandled diagnosis sent me into a deeper denial. I didn’t trust that neurologist, I didn’t trust her staff. “Consistent with…” wasn’t convincing enough for me. I was just in disbelief. So I waited for a second opinion. I had to wait almost a month for an appointment, but that time wasn’t spent in vain. I dove deep into holistic healing, into supplements, mindfulness practices. I tried to re-center myself and prepare for whatever lay ahead of me. WELP I was met with the same diagnosis- Multiple Sclerosis. However, this neurologist didn’t feel comfortable treating MS patients so he advised I find an MS specialist. At first I a little peeved that he said he couldn’t treat me, but I quickly realized that with a confirmed MS diagnosis I wanted a specialist to handle my care. So I’m thankful he looked at me as a human who needed greater care than he could provide versus a walking dollar sign. On to a specialist. Let the waiting game begin.

I found a Multiple Sclerosis center in Orlando, that I thought was a light house! I was so hopeful for this center to be THE center. Boy was I wrong. Not only did the doctor use a condescending tone with me, my mother, and husband (fiancé at that time) when we asked for clarification and guidance, but she absolutely didn’t give a hoot about me or my situation! She didn’t care to hide that either. She quite frankly told me more than half my symptoms were my “mind running wild” and told me to “reel it in” “not get ahead” of myself “that’s not an MS symptom” to something that very much so is an MS symptom... She made me feel crazy and made my journey so incredibly difficult- y’all are in for a doozy when I share this story with you! More details to come at another time.

Having said all of that, I’m in a weird way thankful to have gone through that experience. It forced me and my family to research for ourselves. It forced me to learn about this disease, it pulled me out of denial because I had no choice. I had to fight for direction, for my health, for my life. So no, I’m no longer at that practice, but I am thankful they and that doctor in particular we’re a part of my journey. Could I have made it without the added stress and nonsense? DUH. But I am stronger because of it and that’s what I choose to hold on to. Besides it taught me exactly what red flags to take seriously when it comes to health care providers!

Throughout my time at this center, my body went into a full on spiral/MS meltdown! I gained new lesions. 4 to be exact between October and February. I suffered several new symptoms and relapsed into technically my second and worst optic neuritis fit to date. I lost complete vision in my left eye. Which meant when I would read, watch tv, even look around- HALF of everything was missing. Not like blacked out but swirled & messed up. I couldn’t see my own face as a whole. It was terrifying. After two months of suffering, (and no thanks to the center) I met with my now MS specialist and Godsend! A dream. You see, we (myself, mom, and hubs) never gave up until I found someone I could trust with my life, because at the end of all this it’s my life on the line! Quality of it and duration of it.

He immediately put my worries at ease. He showed me my MRIs and helped me understand. He clarified my LEGO hands were from a lesion not just made up in my head. This was the same symptom, the last doctor told me was “all in my head.” Hmm isn’t that interesting… anyway, he put me on a 5 day steroid infusion which took two weeks to fully dissipate the optic neuritis and I’ve been flare free ever since!

I’m extremely happy under his care, and I would like to encourage all of you to (if you’re unhappy at your current practice) if its possible, look for another doctor! Don’t be afraid to leave your current doctor, if they are mistreating you, not listening to your concerns, or overall not being a good doctor for you. This goes for anyone reading this, if you are unhappy- leave (if possible). I realize not everyone has the ability to “doctor shop” so if you are stuck, do NOT be afraid to advocate for yourself! Speak your truth, stand up for what you do or do not want! We know our own bodies best, it is our life on the line, so don’t be afraid to fight for that!  

To finish this super long post, I’m about to undergo a very serious, invasive round two of my current treatment. I’m keeping my focus on my health goals and taking it one step at a time. Focusing on what I can control and letting go of what isn’t in my control. It has been tricky, but I’ve noticed an improvement in my life from this practice. I can’t lie, reliving my diagnosis story has been extremely difficult and has brought up loads of emotions that I thought I had overcome, but hey that’s healthy emotional healing! So thank you for reading a condensed, but somehow still super long diagnosis story!

Xx,

Arose