Typically, a Multiple Sclerosis diagnosis comes months–sometimes years–after people develop troubling symptoms. I was given a diagnosis within 24 hours. It felt like 3.5 seconds.
Many people have asked me how I got a diagnosis so quickly, and if I had suspected that anything was wrong before that. The short answer is “no”. The longer answer is “it’s complicated”.
You see, I’m currently a stay-at-home-parent to an adorable, spirited two year old. I am obsessed with him, but this is another way of saying that I function as a capable adult approximately 4 percent of the time. Every early symptom that I had, I explained away by saying “I did this to myself,” or “having children is hard”.
It is difficult, having a child, but it never occurred to me that the brain fog, extreme fatigue (best described as worst-case Mono x 1000), and periodic numbness, tingling, and pain in my body was caused by anything else besides childbirth/child-rearing. So I went about my business, thinking that my body wouldn’t be the same after having a child and I just had to deal with it. That, and/or maybe I had slipped a disc in my back while exercising.
I was diagnosed on January 19th of 2018, and I remember shortly after my diagnosis I told my MS specialist that I had no real symptoms before THAT WEEK. That’s when my husband reminded me that I had been complaining about weird sciatica, numbness, pain, and fatigue for at LEAST 2 months, so…there’s that.
However, it wasn’t until a few days before my diagnosis that I realized something was terrible-no good-very bad-kind of wrong. It started at a friend’s birthday party when I realized that I was having trouble seeing out of my left eye. First, I started seeing floaters. Then my vision started to blur. I chalked it up to some sort of eye infection from not changing my contacts enough (I know, I’m lazy) and vowed to call the ophthalmologist. Two days later, I lost all color vision in my eye. A day after that, I woke up and everything was black.
While all of this was happening, the rest of my body was under siege. The pain, numbness, and tingling in my hands, legs, and feet–simply an annoyance before–crept up and up until I couldn’t feel my hands, feet, arms, and legs. The sciatica that I had been feeling in the back of my left upper thigh turned into a burning hot poker. I could feel my head and shoulders–nothing else. I could barely breathe because the MS hug had my rib cage in a death grip. I could hardly walk or lift my arms because I couldn’t feel what 75% of my body was doing.
You would think that would be enough for me to run straight to the emergency room, but 1.) I prided myself on not being a hypochondriac; 2.) I had a small child and no child care at the time; and 3.) I could barely walk, much less run. By the way–NONE of these are valid reasons for ignoring your health.
It wasn’t until I called my father-in-law, a doctor, and explained that I couldn’t see out of my left eye (I didn’t even tell him about my other symptoms) that I realized I shouldn’t be messing around.
I ended up at the ophthalmologist’s office first. Within 5 minutes, they sent me for testing. I failed every test I was given. After about 3 hours, the ophthalmologist diagnosed me with Optic Neuritis, a common first symptom of MS. She explained that it wasn’t enough to make a diagnosis, but Optic Neuritis, combined with all my other symptoms, pointed to this being a textbook case of MS. She then told me that I’d be admitted to the hospital so that they could administer a heavy (ugh, awful) dose of steroids to take down the inflammation of my optic nerve (and to prevent me from causing more permanent damage to my eyesight), and that the neurology team was going to administer some more tests and take an MRI to determine what, if anything, was causing all of my symptoms.
After being admitted, I was then submitted to a battery of neurological tests. One common neurological test that they do to test MS is what I’ve coined the “Pat and Prick” test–a test where the doctor uses a sterile safety pin to test skin sensitivity by poking or pricking hands, feet, legs, face, and torso. Considering that I couldn’t feel the majority of my body, it was highly anxiety provoking. Every time I was given a new test, I “failed” it.
I hate feeling like I’ve failed anything. It causes me a great deal of anxiety. This anxiety, coupled with worrying about what possible disease was ravaging my body, was enough to send me into a pretty deep depressive cycle. It didn’t help that I had to stay overnight in the hospital (which, barring the birth of my son, I’ve never had to do) and things weren’t moving as quickly as I would have liked them to. I spent the entire night worrying and trying not to consult Dr. Google (impossible, by the way).
It wasn’t until early the next morning that I got my MRI. Many people hate getting MRIs. They’re claustrophobia-inducing, due to the various pieces of machinery they put over you; they’re loud–incredibly so–even with earplugs or headphones in; and they’re uncomfortable. I spent 2 ½ hours in the MRI machine, getting imaging of my brain and spinal cord.
I didn’t have any anxiety about being IN the MRI; I was worried about what the technicians and doctors would find. It occurred to me about halfway through the scan that they may find a tumor, and that possibility scared me more than a MS diagnosis.
About 2 hours later, the neurology team came to me with my scans and a diagnosis. They explained that the lesions present in my brain and spinal cord were consistent with my symptoms, and enough to diagnose me right then and there with Relapsing Remitting Multiple Sclerosis (RRMS). The good thing, they explained, was that there was little evidence of prior disease activity which meant they caught the disease early. The bad news was they were worried about how seemingly aggressive the onset of my symptoms was.
Despite the fact that I thought I had prepared myself for this moment, I shut down. I later told my husband (who was there with me when they gave me the diagnosis) that it was like I blacked out. I completely disassociated from the situation. There was no processing. I asked no thoughtful questions. I didn’t even cry, which for me, someone who cries at the drop of a hat, is UNHEARD OF.
All I wanted was to get out of that hospital room. Luckily, they needed the hospital bed I was occupying, so I was discharged and given instructions to return to the ER for the next few days for steroid treatments, and a referral to a MS specialist.
In the months that have passed since my diagnosis, I’ve gone through several stages of denial, grief, anger, depression, and hopelessness. I’ve asked for second opinions, I’ve had to make difficult decisions concerning my family, and I’ve had to rely heavily on my loved ones for help and emotional support. It’s been a really tough ride–and I’m sure it’s going to continue to be that way for a little while. However, I’m choosing to see the silver lining in this journey.
It’s taken a diagnosis of Relapsing Remitting Multiple Sclerosis to get me to not take my life or health for granted. It’s also whipped me into shape. I’ve made myself a promise that I will dedicate my time and energy to staying healthy and happy with a mix of diet, exercise, and smart lifestyle choices. Multiple Sclerosis is a highly individualized, unpredictable illness. I’m starting this blog because I don’t want to feel alone as I navigate these waters. My hope is that this blog will serve as a positive, encouraging space for those of us who are coping with MS and other various autoimmune diseases. I hope you’ll join me.
In health,
D
Living in Color 