The Mystery Illness: Part 1, Symptoms

This is a long and winding story that will be broken up to parts. 

It was summer in Los Angeles and my life had been going pretty well. I had consistent work (and when working freelance that’s really important), I had great friends, and I even had a boyfriend who I started dating a few months before. I moved into a new house that June – one where I would have more private space and access to a garden, a private outdoor area.

Three days after moving, I woke up to a weird sensation in my head. It felt like pins and needles were starting at the back of my head and reaching around, sometimes hitting my whole body in a surge of tingles. I immediately started to panic since I had never had that specific feeling ever and it continued pulsing throughout my body, every ten seconds, for the rest of the day. Towards the end of the day, I figured it would be best to go to an urgent care and see if they knew what it was. The doctor smiled at me and said it sounds exactly like an atypical migraine (which other doctors would later completely disagree with) and she gave me a recommendation to see a neurologist.

Two weeks pass and I wake up having to pee. I go to the bathroom and as I’m walking out, I have to pee again. It seemed like classic UTI symptoms and once I felt burning as well, I headed straight back to the Urgent Care. There, I was immediately given a prescription for Cipro or ciprofloxacin, a fluoroquinolone antibiotic, that should have cleared my symptoms. They had the bottle right there ready to go, so I popped a pill and started driving to work. I had never taken Cipro before, but I had also never had a reaction to an antibiotic, so I didn’t look it up before taking it, as I usually do with prescription medication. Antibiotics, I assumed, were safe. On my way to work, I could barely hold my pee for 5 minutes before I had to go again, so I called my boss and told her I couldn’t make it.

Two more days go by and my symptoms have barely gone away, so I call the doctor at the Urgent Care and he says it’s odd that the Cipro didn’t clear my UTI. “It’s a very strong antibiotic,” he said. I asked him why he gave me a strong antibiotic for a simple UTI, but he ignored me and prescribed two types of antibiotics that I had to take together. Later, I would learn that Cipro is overprescribed for UTIs and simple infections because it is a general antibiotic. Although it’s extremely strong  (it can kill Anthrax!), doctors don’t have to run a culture to figure out what antibiotic would treat the infection because Cipro usually covers it all. That’s pretty cool for doctors, but I’ll explain later why it’s terrifying for everyone else.

The new antibiotics killed my UTI effectively, so I carried on with my life until my right arm went numb for no reason as I was writing an email one night. I figured perhaps I had sat on it, or it was positioned in a weird way and fell asleep, that I simply hadn’t paid attention. I get random bruises all the time and don’t know where they come from, so I figured this was a similar situation.

Oddly enough, the next day my right arm was still numb, but not numb enough to garner that much attention. I could still feel pressure and temperature. I could still move my arm. At this point I assumed something strange was going on, but chose not to worry and monitor it as it went along. I was already keeping a symptom diary for my strange pins and needles feeling, so I added the numbness onto that list of symptoms for my neurologist to check out in October (yes, I couldn’t get an appointment until October).

At work, I continued to carry things around and drive cast around. I worked as a Production Assistant for some Food Network shows and the job was somewhat strenuous with long hours and fairly poor pay (as with any PA job), but I knew I had to pay my dues and I loved the crew I worked with, so I didn’t mind. As I was working on that particular day though, I noticed I was feeling extra tired compared to usual. I had gotten about 9 hours of sleep the night before and there wasn’t any real reason for me to feel tired, but I again ignored it and continued on with my day. At the end of that day, I drove to my boyfriend’s apartment to water his plants since he was away visiting friends. As I was brushing my teeth and getting ready for bed, my left arm went numb, to match my right arm. Now I knew I had to do something.

I texted my mom and my boyfriend about the left arm after I was done brushing my teeth only to feel my left leg go numb as I was typing. At this point, I started to cry. I didn’t want to, but my mother and boyfriend urged me to go to the ER.

At about 10PM, I drove to the ER in my pajamas with my numb appendages (my right leg has gone numb too by the time I arrived), sobbing a bit, nervous about what was going to happen. People have stomach pain, sure. Random back pain? Chest pain? But I had never heard of anyone randomly going numb. That night, I spent only about an hour and a half in the ER – the fastest I had ever been seen. They didn’t take any tests, but a seemingly kind female ER doctor with blonde hair told me that my symptoms matched early stages of Multiple Sclerosis and she walked away. The doctors there told me nothing else except that I wouldn’t know for sure what was going on until I saw a neurologist.

The next morning, I reported to work again, bright and early at 6AM, which was my usual call time. I hadn’t gotten too much sleep considering my evening ordeal and my numbness hadn’t gone away. In fact, it was getting much worse. My fatigue was also getting much worse and soon it was difficult to stand for more than five minutes. I tried to sit as much as possible in order to make it through the day. I usually put on a happy face, but with how absolutely dreadful it was to merely exist at that moment, not getting any answers whatsoever, I spent my down time calling doctors and trying to get earlier appointments. I found myself falling asleep while standing and my entire body started to hurt. It was so much to bear that I asked to leave work early. My bosses gaped at me with what looked like either concern or horror and told me to text them with updates about my health.

I drove home around 7PM and decided to go to bed early. Perhaps that would make me feel better. I drifted off, quite optimistic that I would feel better when I woke up the next morning, but instead I woke up three hours later. My chest, my throat, my tongue, and my entire face had gone numb. Shocked, I screamed. Great, my vocal cords still worked, but of course no one could hear me because I lived in a detached bedroom behind my house. I texted my roommates and told them the situation, asked if they could check on me before they went to bed.

I stumbled towards the other side of my room and looked in the mirror, seeing nothing abnormal. I touched my face, feeling nothing. I moved my tongue across my lips and the roof of my mouth, feeling pressure, but not much else, like someone had tried to put me under for surgery but I was still awake. I texted my roommates again asking if one of them was available to drive me to the ER because I was too afraid to drive myself.

This time my ER experience was very unlike the previous considering I had to wait three hours to get in and after that, they didn’t let me out until 6 in the morning. I had new symptoms. My lower back and my arms started hurting. I had random chest pain that I didn’t have before. They ran an EKG as soon as I entered. It came up normal. They ran a chest x-ray at about 5 in the morning (I had fallen asleep in my hospital bed for awhile before this happened. My roommate was long gone) which also came up normal. The doctor told me he didn’t know what was wrong with me and sent me home. Considering my roommate had left (and I pretty much begged her to for hours – I felt so bad since we were waiting for so long and she had work the next morning), I caught a Lyft back home. The Lyft was quite uncomfortable because the driver cheerily asked how I was doing and I knew I wasn’t supposed to say anything but good.

I didn’t go to work the next day… or the day after. Or ever, really, because the show ended and I hadn’t gotten better. I spent two weeks on the pull out couch in the living room out of fear that I would die in my sleep and no one would know. My facial numbness came and went. Sometimes, I would wake up to it at 2 in the morning and call my mom (who lived in NY) in extreme panic. Some days I couldn’t sleep at all and spent my free time researching anything my symptoms could be. I came up with nothing.

Some days I physically couldn’t leave bed and since I couldn’t really drink water or eat either, I didn’t really have to… or I crawled to the bathroom in emergencies. I felt very nauseous and had no appetite whatsoever even though I wouldn’t eat anything for three days straight. In those two weeks, I lost 20 pounds.

It finally came time to see my neurologist, who seemed very confident he could diagnose me with a comprehensive blood test and a few MRIs. According to him, it could be a number of things, but he was cancelling out the really bad ones. Possible diagnoses included MS (of course), a brain tumor, lupus, HIV, Lyme Disease, Guillan Barré, thyroid problems, and a number of other things. Pretty cool that they all came out negative and when I got the results, my neurologist asked to see me in a month. He told me to follow up with my general practitioner. I was so pissed. It seemed like he was giving up, but really he probably assumed that my general practitioner had more answers. He did.

A few days later, I met with my GP, an internist who studied at Harvard and also practiced using alternative medicine. He even had a massage room at his office. My doctor wrote everything down on that odd wax paper sheet that covers the exam chair. He was very focused and listened intently. A look of confusion came across his face until he asked me if I had ever taken the drug Cipro.

“Uh yeah,” I said. “I took if for a UTI about a month ago, but it didn’t work for me, so I stopped it and ended up taking a different antibiotic.”

My doctor than proceeded to tell me that my symptoms matched almost exactly the symptoms of a patient he had years ago who had an adverse reaction to the same antibiotic. He had been bedridden for 6 months and there’s no cure for it. Considering I moved shortly before my first odd symptom and took Cipro after that symptom, it seemed unlikely. Then again, the pins and needles feeling could also be something completely different. He told me that he would research more and that I should research it too.

After a quick google search for Fluoroquinolone Toxicity Syndrome, I learned that these symptoms nearly matched my symptoms exactly. When my doctor called me back a day later and asked what I thought, I told him I wasn’t 100% sure but either way wanted to be less of a burden to my poor roommates, friends, and boyfriend who had helped drive me places and listen to me rant about this mystery illness. I told him if this was it, I wanted to fly to NY and be with my family for awhile as this whole thing blows over. He suggested I stay under his care and he would admit me to a hospital nearby where they could do more thorough tests.

This hospital, to which I was admitted a day later having to unfortunately cancel my flight that was never reimbursed EVEN WITH HOSPITAL ADMISSION PROOF (Fuck you, Allianz), was freaking horrible. They gave me an EEG (seizure test), more MRIs (seriously why what are you doing), and there were at least forty vials of blood drawn. Nurses were impossible to reach and constantly mixed me up with my roommate, trying to give her my tests and vice versa. My pins and needles head thing was acting up which made me feel even worse. I hadn’t been given water until the next evening I was there and all of the food was crap. I asked for vegetables and they gave me tomatoes, onions, and some lettuce on a plate. Not to mention my hospital buddy was talking all night, turning the lights on and off, and turning the tv on and off at full blast.

The only shining moment of that experience was when my incredible friend Claire visited me at the hospital with a pack of bottled water and some flowers. When I was finally released after my last MRI, my wonderful boyfriend took me home and I flew to New York the next day.

To be continued. Read Part 2 here. What helped me heal? Find out here.

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