Road to Diagnosis

March is Multiple Sclerosis Awareness Month. This post is the first of four I will share this month to do my part in helping to raise awareness of this disease. To start with, I’ll go back to the beginning of my journey.

On Christmas Eve 2016 I thought I had the stomach flu. Anyone that knows me well knows how much I HATE vomit. Dealing with it is my own tiny version of hell, so that night is seared into my memory.  I missed traditional chicken noodle soup dinner at my Grandma’s house for the first time ever, but was happily feeling better again on Christmas morning. Three days later, it happened again. Then, again, a week later. I thought, “surely it isn’t possible to have the stomach flu three times in two weeks. Something must be wrong.”

I know now that was actually my second symptom. The first was written off as a byproduct of pregnancy. At 36 weeks with my second child, I noticed that my right heel felt strange. It didn’t hurt. I just… I couldn’t feel it.  It was like touching your lip after you’ve just gotten a filling and the Novocaine hasn’t worn off yet. You can feel it, but you really can’t feel it. I tried massaging my heel, poking it, and even banging it on the floor, but nothing would bring the feeling back. Disconcerted, I mentioned it to my OB at my next appointment. We agreed it was probably from swelling or any other number of strange things that happen to your body when you’re carrying around 50 more pounds than usual.

Five weeks later, at home with a beautiful new baby girl and her very resentful 17 month old brother, I found myself in a rare quiet moment, rubbing a heel I still couldn’t feel and toes that had since followed its lead. I was concerned that I might not ever feel them again, but who has time to worry about such things when there’s a toddler and a newborn to care for? Over time I just got used to it and forgot about it. I’m can’t say for sure if the feeling ever returned or not.

I mention that now because soon after the spells of stomach problems began I noticed I couldn’t feel my entire left foot.

At that point I started to pay more attention. Throughout January and February I sought chiropractic care, still operating under the assumption that something must be out of alignment, but there were no noticeable changes. I sent a message to my family doctor about my continuing stomach issues and mentioned my numb foot as a side note. I later wrote back to include that I’d been very clumsy, dropping things and running into a lot of table corners and door frames. Additionally, I’d noticed several instances of misreading things. Someone had to tell me that what I read as “a clown near your house,” was actually “a town close to your house.”

During those two months I was still teaching full time, caring for my 6 month old and an almost 2 year old (which included co-sleeping and tandem nursing) , feeling mildly annoyed by my foot issue, and experiencing intense episodes of nausea, hot flashes, wooziness, and headaches that left me curled up on the bathroom floor every few days. I survived the days by eating sour candies, candy canes, and peppermints, and taking the antiemetic Zofran that I had left from my countless days of morning sickness. I lost about 20 pounds in 3 months. My husband was the only one that knew the extent to which I was suffering.  

The last week of February was when I was hit by a proverbial truck. Both feet went numb first. Then both hands. Over the course of three days that loss of sensation crept up into my shins, quads, and my entire left arm.  It wasn’t painful, but it scared me. I found myself trying to shake it out, as a runner does before a race to loosen up and get the blood flowing. I clenched my hands into fists and stretched them out again, just to be sure I still could.  

I went to play pick-up soccer that Saturday morning. I thought maybe some exercise would improve my circulation or reset whatever glitch was messing with my system. I tired quickly. Running made me feel slow. My legs felt like lead and I didn’t have enough strength to even lock my ankles when kicking the ball. It was my first time back on the field postpartum, so I angrily assumed my conditioning was at an all-time low and left the game feeling frustrated.

Back at home, my condition did not improve with rest. I sent my doctor yet another message describing the latest developments and was answered with a personal call from her home phone. From the way I had described the progression of the numbness, she was concerned that it could be from a virus that, if not treated promptly, could lead to more devastating problems. Her immediate referral to a local neurologist was the greatest gift. I received a personal phone call from said neurologist first thing on Monday morning with instructions to come see her for her first available appointment on Wednesday, but to head to the emergency room if things got any worse.

I made it to my appointment Wednesday, feeling slightly better than I had been. After a complete neurological workup she shared the opinion I had been expecting. (I’d been doing a lot of googling). It sounded like it could be MS. Unfortunately, it is actually quite difficult to give a diagnosis of Multiple Sclerosis. The first step is to rule out EVERY OTHER POSSIBLE CAUSE of symptoms through a battery of blood tests, MRIs of the brain and thoracic spine, and a spinal tap, which was performed in the office that very day.

I went to work as normal on Thursday. My hands and legs were stiff, but I was getting used to it. My back was sore from the spinal tap, but I worked through it. I even went on a walking field trip up the hill to an event on the college campus. As soon as I got home, I fell asleep on the living room floor. I woke up on another planet. I felt anxious and confused. It didn’t know what day or what time it was. I was physically functioning but had no sense of time or space. My husband asked if I was ok and after he repeated himself several times all I could muster was “I don’t know.”  I understand now that I was experiencing a migraine with aura, which was just the precursor to the full-blown spinal headache I would suffer for the next three days. When I woke up the next morning I had a horrendous headache but I took some advil and headed off to work for a full day of parent-teacher conferences. By the time I arrived at the school, a whole eight minutes later, I was on the verge of vomiting from the pain and disorientation. I took some Zofran and more advil before laying on the floor of my classroom, because I didn’t know what else to do. Laying down felt incredible; the relief was immediate. Still laying on the floor, I called our school secretary from my cell phone and asked her to call ahead and let me know when a parent arrived, so I could get off the floor to greet them.  Fortunately, I only had one show up. I made it through that 20 minute conference and went straight back to the floor. My co-workers checked in on me periodically and even brought me lunch – which I ate on the floor. I was finally able to get ahold of my neurologist, who suggested I go to the ER to get a blood patch – procedure using a small amount of my own blood to patch the hole from which my spinal fluid was leaking.

I arrived at the ER shortly after lunch, prepared to get a blood patch and go home. Instead, I was put through the protocol for pain management and first was given Dilaudin, an opioid analgesic, through an IV. I shared with the nurse that I am very sensitive to medications and was concerned that it would make me sick, but was told that the “baby dose” I was receiving never made anyone sick.  The medicine actually made me feel worse than I did when I arrived. My whole body tensed up in resistance to the relaxing effect of the medicine. I became extremely nauseous, my stomach was burning, and I still had a headache. After it was determined that the medicine they gave me didn’t manage the pain, the anesthesiologist was called to do a consultation for the blood patch. I used the time I spent waiting for him to pump breast milk, because even though I knew the narcotics in my system meant I would have to throw out every drop for the next couple days, I had to continue pumping to keep up my supply and avoid getting engorged.  Several hours later, the anesthesiologist counseled me to not get the blood patch because there would be some risks involved and most spinal headaches resolve on their own anyway. So, after all that, I just went home.

I spent the next 48 hours laying on a floor somewhere in my house, mostly the living room and the bathroom. I wished the hours away while I pumped and dumped, and stared into space, unable to sleep because of the caffeine pills I was taking to help with the spinal headache. To add insult to injury, I also began to experience nerve pain, a burning sensation that seems like it’s just below the skin, on top of the smoldering fire pit left in my stomach from the Dilaudin. My parents and in-laws brought food and watched my children, while my husband tried to distract me from my discomfort with funny videos on YouTube.

During that time, results from my blood tests started to trickle in. I checked my patient portal every few hours, hoping to see an answer. With every test that came back normal I knew I was one step closer to an MS diagnosis. The few tests that did come back with abnormal numbers sent me into a black hole of googling and fearing the worst. At one point I believed my low BUN/creatinine ratio meant that my kidneys were failing, when really I was just a bit dehydrated. That anxiety skyrocketed when I took a bath, hoping to relax and ease some pain, and lost feeling throughout my entire body. My chest became so heavy and restricted that I could barely breathe. I sat on the floor sobbing, scared out of my mind and convinced I was dying. My husband decided it was time to head back to the ER. More blood tests. More begging for answers. I was given IV fluids and sent home with Xanax as “a tool to help me get through.” I never took it because my baby needed milk.

Finally on Monday morning the MRIs were done. After that, all that was left to do was wait. I returned to work on Tuesday. I stood on legs that felt like leftover noodles – cold and stiff on the outside but weak and wobbly on the inside. I taught through the pain and numbness, and tried to keep my mind occupied.

My neurologist saves her Friday afternoons for paperwork and administrative responsibilities, but she set an appointment for me to go over results that Friday at 1pm – St. Patrick’s Day and the day of the second grade field trip to Splash Lagoon.  

I sat in her office looking at her computer screen as she told me the story of how the radiologist who looked through my images reported them as normal, but she looked at them herself and went back to the radiologist. She showed him two spots that warranted adding an addendum to his report.  Two tiny lesions that were mistaken for traces of movement from when picture was being taken. The last piece of the puzzle, the last result to come in (which was not shared ahead of time on my patient portal) was from the spinal tap. That test looked for the presence of oligoclonal bands – proteins suggestive of inflammation in the central nervous system. 70 – 80% of MS patients test positive for CSF OB.  I am one of them.

The rest of that appointment is still a blur to me. The doctor is responsible for explaining the criteria used to make the diagnosis, what that condition is and what it means, and then checking to see that the patient shows understanding of the diagnosis. From there, they must present treatment options. I know she did all of that. I know I understood and participated in the conversation. Before I left the office, I chose from a list of 10 or so disease modifying medications to start. I went home and dressed my babies in their St. Patrick’s Day outfits and had the best day playing with them. It wasn’t until late that night, when everyone else was asleep and the house was quiet, that it sank in. All I could see were the things that I would lose to this disease, and wonder what the point of living would be if I couldn’t see, write, talk, chew and swallow, walk, or even get out of bed. I was in a dark and endless tunnel. Two days later, I hosted my son’s second birthday party.

** My road to diagnosis was NOT typical. Many people spend years dealing with symptoms before enough evidence can be collected to make the diagnosis. Others suffer extreme initial episodes that are unmistakable, like suddenly losing the ability to see or waking up and being unable to move. Every case is different from the very beginning. **

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