Today I started physiotherapy. I had to walk for 20 minutes around the ward with a wheelchair right behind me to catch me when I fell. At first I needed to use the wheelchair quite a bit but I was slowly able to walk further without falling.
Today was Mother’s Day. It was a quiet day because the kids were with Grandma and Grandpa. That night they visited me in the hospital. The kids gave me lots of cards and 3 beautiful plants. Tavis got me a wheelchair and we went outside in the courtyard to enjoy some time in the garden with our Subway sandwiches. It was a short visit but the highlight of my entire weekend.
Today I also got a wheelchair so my husband was able to take me outside to the garden. It was my first time out of the room since I was admitted.
A few friends came to visit today. I had a few episodes but only when I moved suddenly for hugs or to grab something. It was great to have visitors because my husband was able to relax a bit. That night I took 1/4 of a sleeping pill and went to bed. It was my worst night at the hospital and the last night I took a sleeping pill.
This morning the hospitalist came to check on me. He reported that all test results from the hospital have come back normal. He let me know that I would see a psychiatrist and that the only test really left from a medical point is the lumbar puncture to rule out any infections in my body. We stopped recording every episode since the doctors didn’t seem too interested in them.
Later that morning my husband came to visit. While he was in the room a psychiatrist came to see us. She went over my history and looked for any signs of Depression or Stress to report to her team. She said there really wasn’t much that she could tell but another thing they are looking at is Cataplexy which is a sleep related disorder.
After school the kids came to visit briefly on their way to Vancouver Island. It was great to see them. I had an episode while they were at the hospital but by now we had determined that by resting I was able to minimize the number of episodes I was having.
Our neurologist came out to visit after 8:00pm. He told me he wanted to do a lumbar puncture to rule out infection. We were hoping to have the test early next week.
That night I took 1/2 a sleeping pill to help rule out sleep disorders. The next morning I woke up at 6:30, then 7:30, then 9:30. I was extremely tired all morning and which was most likely due to the sleeping pill.
I had a new nurse who helped me get out of bed on my own and she stayed with me for 30 minutes while I waited through the episodes. It was the first time a nurse asked me what I wanted to do and helped me do it. I walked to the bathroom to brush my teeth and clean up. After I sat by the window to try and keep myself upright. I had several episodes but I pushed through.
My first episode of the day was around 8:30am when I tried to sit up. I went out but was able to talk and move almost immediately. I went out again 2 minutes later but was able to move again within minutes. After 5 minutes I had full control of my body again. We were starting to think that movement was causing the episodes.
At 11:00am I was talking to the school Secretary to let the kids teachers know that I was okay but still in the hospital. Part way through the conversation I went out. It took 3 minutes before I could open my eyes or speak. I tried to fight it again and it took 10 minutes to regain full movement.
My husband went home to rest around noon and my Mom stayed with me. I had another short episode at 2:15. The doctor came at 2:30 with CT results and all tests so far have come back normal. I have 2 stones in my gall bladder but that is all that was found.
Around 3:00pm I had the holter monitor strapped to me. It is like the ECG but monitors over 24 hour period. At 3:10 I had an episode and another one at 3:15 that lasted 10 minutes. At 3:50 I had another episode that lasted less than a minute and then went out again for 5 minutes. I had another episode at 3:55 which lasted 20 minutes. As I was coming out of it I had more blood work done to test electrolytes.
My brother came for a visit today as well. It was great to see him even though it was a short visit.
At 6:30 I had 2 five-minute episodes and again at 7:20. At 8:30 we were playing another game on the tablet when I had another 2 episodes lasting about 5 minutes each. My husband stayed until 9:00pm and then decided to go home and get some sleep. My roommates said they would look after me while while my husband was away.
We woke up at 6:30am. I didn’t think I had any episodes through the night but shortly after I fell into one that lasted almost 15 minutes.
Just before 8:30am I felt another one coming on. I called my husband and he observed me. I could still speak lightly and move for another 3 or 4 minutes before I fell into a full episode. About 5 minutes later I could speak again but when the nurse came in I still couldn’t move. She took my vitals. About 15 minutes later I was able to move again. I had an annoying cough that scared me because I was worried I wouldn’t be able to breathe with the phlegm in my throat.
I had another episode at 10:20am when my youngest sone came to visit. He lied down next to me and lowered my bed. I was able to speak after 2 minutes but it took another 10 minutes before i could move my arms and legs.
My husband went home around noon to get some sleep and returned around 3:30. While he was gone I had a 10-minute episode around 12:30. I had another one around 2:00 and then went in for my EEG around 2:15. During the EEG I had a complete episode which lasted around 5-10 minutes. Shortly after I got back my husband was there with coffee for two of my roommates.
At 3:15 we had just finished playing a board game on the tablet and I had another 2 episodes back to back. The first one lasted only a few minutes and I could move after 10 minutes. Then I went back out and was able to move again after 5 minutes.
An hour later I was told I was going for a CT of my organs (this time with contrast). The nurse tried to put a second IV in me but failed. I ended up having a panic attack (sweating, nausea, shaking). It could have been due to the tensor on my arm being too tight. In the end we did not get another one in and the CT technician said the small one already in was sufficient.
The episodes are now lasting approximately 5 minutes. I had another at 5:00, 5:10, 5:40, 5:45 (lasted 15 minutes), 7:10, 7:20, 8:10, 8:40., 9:00, and 9:15.
At 9:30 I got up to go to the bathroom and collapsed just outside the door. My husband caught me and I was able to get up after a few minutes, go pee, then went to bed and fell asleep for the night.
My husband crawled into bed with me and slept by my side all night again.
At 5:00am a nurse came in and gave me liquid potassium in apple juice. At 7:00am I woke up to a nurse, taking my vitals. I also had some blood work done. Everything was normal.
Around 8:30am I had another episode just before my husband arrived. Shortly after he arrived our nurse informed us that the MRI department scheduled us in a 2:00pm but there was confusion. As an outpatient a scan of the brain was requested, but as an inpatient a scan of the spine was requested. They would not combine the two requests. Our nurse spent the morning trying to contact a doctor so both scans could be done at the same time. It took her quite a while but she finally got a hold of a hospitalist who authorized the request.
Just before 1:00pm I got up to go to the bathroom. When I got back I felt really tired and had an episode. I tried to stay awake and became dizzy trying to open my eyes. I eventually just let myself relax. About 10 minutes later I started to come out of it. A minute later I could move my hands and I whispered “I’m scared”. I had tears in my eyes. It took 30 minutes before I could move my legs and arms but I was physically exhausted. My fingers could move but they were weak.
I went for the MRI at 2:00pm. There was a 97 year old lady who had been waiting for 3 years to get her MRI to investigate an ear problem. After waiting 30 minutes I was brought into a second room with an MRI and it took approximately 45 minutes. I only moved once when I fell asleep but I didn’t have any episodes. They were able to get all the images they needed.
I did have a small episode around 5:00, which lasted about 5 minutes. Then at 6:30 I had one that lasted only 2 minutes. At 9:30pm I had one last episode that lasted 20 minutes. When I came out of it my husband came into the bed with me and did not leave my side all night.
Monday morning started off uneventful. I had an excellent sleep but I didn’t want to get out of bed. I showered, got kids ready for school, and started laundry. I cleaned up the living room and helped my son put together his Lego train set. My husband was working from home so I let my son stay home with Dad while I went to Costco to get groceries.
While I was shopping I noticed that I was still a bit tired which is a somewhat unusual for me at 10am but I didn’t think much of it.
By the time I finished shopping and got in line I noticed I was quite a bit tired so I texted my husband and told him I was going to bed when I got home. I thought maybe I was coming down with something.
When I reached the cashier I barely had enough energy to lift the groceries out of the cart so I left all the item items in the buggy which I felt was being lazy but I didn’t care. I realized at that point that I was extremely tired and it probably wasn’t a good idea to drive home so I called home.
My husband’s business partner was already at the house working so I gave her the message to come get me. I was a bit scared and I could tell that she sensed it. She said they would come get me. The cashier asked me if I was ok and I told him I was fine and that my husband was on his way but I had tears in my eyes. I slowly walked the cart to the car, struggled to get the groceries in, climbed into the passenger seat, and closed my eyes. I had no energy at that point and was too tired to do anything else so I tried to sleep while waiting for my ride.
A few minutes later I heard my husband’s car. He came to the window, saw me slumped in the seat, and told his business partner he would drive me home. I told him I just couldn’t keep my eyes open so he said to rest and he would take me home to sleep. Just before we got home I realized that I couldn’t move my arms, legs, or head and I struggled to say “Maybe you should take me to Emerg”. He responded by saying “No, I think you just need to sleep so I will take you home”. At this point I realized I couldn’t talk or move or open my eyes. But my husband didn’t realize this yet.
I was trying everything I could to tell my husband that something was terribly wrong. I felt wide awake and alert inside but no matter how hard I tried I could not open my eyes. When I tried to speak all I heard was a faint noise. I couldn’t get his attention and I started to panic. It was only a few moments until we got home but all I could think about was what if this is it? What if I stop breathing? Am I dying? Will I ever see the kids again? What is wrong with me? I could feel tears coming out of my eyes but I couldn’t do anything about it.
When we got home my husband tried to wake me up. He told me we were home which I already knew because I could hear the garage door open and the car had stopped. He tapped my shoulder. He lifted my hand. He tried to wake me but I couldn’t acknowledge him. His business partner pulled into the garage, took one look at me and announced that she was going to call an ambulance.
At that point I remember feeling a bit relieved that someone was on their way to help. I tried opening my eyes but it took all of the energy I had just to open them a tiny but. I could hear my husband and his business partner on the phone with someone asking questions: “Is she responsive? Is she breathing? Does she have a pulse?”
They were trying to figure out if I was breathing ok so I focused hard on taking deep breaths to make it easier for them to count each time I breathed in and out.
Soon a fire truck came and the fire fighters took over. They were speaking to me and I was trying to answer but no one could hear. “Yes I am wide awake. Yes I know exactly where I am. Yes I know the date. Yes, I can breathe but I can’t move.”
I could feel them take my pulse and open my eyes. At this point I was slowly able to open my eyes a bit more. I could speak very faintly but just in a whisper. The fire fighters asked much of the same questions as the person on the phone. They determined that I was responsive and my vitals were fine. This was a relief.
Shortly after, the ambulance arrived and the paramedics took over. They checked vitals again. I could also hear a big vehicle drive by and a few moments later I heard a friend come over to offer help. I knew she was on the school field trip. At that moment I realized the school bus just drove by and my oldest son, along with several students and teachers, saw the fire truck and ambulance in our driveway. I felt so bad because I knew everyone would be worried, especially my son.
Then I heard my 5 year old come close. He was so excited because he had just been in the firetruck. It made me smile inside. Everything was under control so the parent left to tend to the kids on the field trip. The paramedics asked my husband to move the car out of the garage so they could get me onto the stretcher.
By this time I was a bit responsive. The paramedics asked if I could move onto the stretcher. I thought I could but I just couldn’t hold my own weight and collapsed immediately when I tried to push myself out of the car. Both paramedics helped lift me onto the stretcher and into the ambulance. My husband was going to follow but they told him he could come with us so he jumped in the back with me. That made me feel so much better because I didn’t want him to have to pay for parking.
Once we were in the ambulance they put a tube into my nose and hooked me up to oxygen. The paramedic also pricked my finger to test my blood sugar. It was 3.9 which is low, but 4.0 is considered normal. All that I had eaten today was a few grapes a couple of hours earlier so this condition was not caused by my blood sugar levels.
Naturally, as the ambulance pulled out of the driveway, the MRI department called the house to set up my appointment. My husband’s business partner, who was home with my son, told them I was on my way to the hospital in an ambulance which really complicated everything. I learned that you have to be an in-patient or an out-patient to schedule your MRI. At this point I was neither and couldn’t schedule anything until a doctor admitted me or sent me home.
We arrived a the hospital around 11:30am. The paramedics brought me in on a stretcher. I was still too weak to really move. I was gaining mobility in my arms and I could wiggle my toes. I stayed in the entrance as the paramedics “checked me in”. Then after what seemed like an hour I was moved to a hallway in the back where there were two other stretchers.
The two paramedics who came in with me stayed for a while before they got called out again. Another paramedic was assigned to watch over all of us. I stayed in the hallway for most of the day. Around 5:00PM someone came and took 3 viles of blood. I also got an ECG done.
Around 6:30PM, when the paramedic was going off duty, I was moved into an area in Emergency and my care was then transferred to a nurse. About 5 minutes before they moved me I went into another episode that lasted about 15-20 minutes. Everyone thought I was sleeping but I was fully aware of what was going on. I knew I was moving but didn’t know where to. My bed was placed directly across from triage so we had a good view of everyone getting admitted.
I was still really tired at 7:00pm. I told Tavis “I’m really tired, I just don’t want to wake up”. The nurses took my vitals and everything was normal. Even my blood sugar levels were at 4.4 which is normal. At this point I still hadn’t eaten anything since my snack at 8:00am. At 7:30 my brother came and brought pizza for me and a sandwich for my husband.
At 9:00pm we finally saw a doctor. He ordered a CT of my brain. About 20 minutes later I went down for the test and I was back in 10 minutes! My brother stayed until about 11pm when my parents finally arrived (after a 3 hour commute). They left a car for my husband and my brother drove them to my house to watch our kids and relieve my husband’s business partner.
My husband stayed until just after midnight then went home to try and get some rest.
I didn’t get much rest. As soon as I fell asleep a nurse came to take my vitals or check in on me. There was also a naked man who kept wandering into the hospital, touching himself and peeing in public. Security removed him a few times and Triage kept bringing everyone in to the back where they were away from the disturbances.
I am not sure when I finally fell asleep but I was quickly awakened around 4:00am. A porter came to move me to my room but the nurse was on a break. It didn’t take long for me to realize I was having another episode.
The porter tried to wake me but couldn’t. I felt her pinching me. She asked for help waking me and I heard at least three other people come. They were poking and pinching me and talking quite loudly to me. One person rolled a pencil on the back of my left hand and bent my fingers back. I finally gained enough strength to whisper “Ouch” which got their attention. Someone asked if I was in pain and I whispered only “my hand”.
The porter then decided just to move my bed with me in it. About half way to the room I was coming out of the episode and the porter asked me if I normally sleep that deep. I told her “No” and explained the situation. It was not her fault, it was just bad timing. I should have never been left alone without a nurse who knew my condition. If someone would have read my chart or the nurse would have properly explained why I was there to the nurse who was covering they would have known what was going on.
I realized then that I need to have someone with me at all times who can speak for me when I can’t.
When we got to room 327 on the 3rd floor of the North tower I had enough energy to flop myself onto my bed from the stretcher that I was brought into the hospital on. Thus began an 11 day stay at Royal Columbian Hospital. I was officially admitted as an in-patient.
The next morning my foot was still tingly but I could put some weight on my leg. After the kids went to school a friend came to the door and I went downstairs to answer it. As I was telling her what happened I could feel my foot getting a bit heavy and I couldn’t move my toes any more. I had to use my arms to get up the stairs and knew it was getting worse. My husband drove me to the Chiropractor. He had to help me into the office but the Chiropractor worked his magic again and I was able to limp when he was finished. However, he was very concerned and told us to go straight to the hospital to get a second opinion. He stressed that we needed to demand that tests be done because what I was experiencing was not normal.
Not expecting much, my husband took me straight to Royal Columbian Hospital. There was a long wait and we knew it would take hours. We contemplated leaving because my leg seemed fine and I didn’t think they would even get to me since there appeared to be nothing wrong. Despite our skepticism, we stayed.
A few hours later I was unable to move my leg or wiggle my toes. After about 4 hours we saw a hospitalist who did several reflex tests and said this was “both confusing and concerning”. He immediately referred me to a neurologist.
After another 2 hours in Emergency, the neurologist came and did every reflex test he could think of. It was very interesting because my leg did everything it was supposed to on its own but I had no control over it. I couldn’t move my toes, but I could feel them.
The neurologist was concerned about my safety without the use of my leg and asked me to stay in the hospital. We had a big weekend ahead and I just wanted to go home. I promised I would do nothing at home and that my husband would take care of me so he discharged me and put in a request for an MRI. He said to expect a call over the next few days to schedule an appointment so he could rule out anything serious such as Multiple Sclerosis.
I returned home and continued taking Tylenol. We hosted a surprise birthday party on Saturday for my husband’s Aunty and a work BBQ on Sunday so I had lots of distractions.
On Saturday morning around 4am I woke up and was able to move my foot again. It was still tingly but otherwise normal like before. Throughout the day I had mobility but it seemed to get worse as the day went on.
That night I was rubbing my left foot and all of a sudden there was a bit of a crack and then the tingling just stopped. Almost instantly my foot had full motion. It was the craziest thing. I figured I cured myself!
Everything returned back to normal and Sunday was a great day. I also remembered not to eat and drove myself to the lab to get a ton of blood work done on Sunday morning.
When I woke up Thursday morning, I still had the pins and needles in my foot. I could put weight on my leg and it felt relatively normal so I continued on with our special day. We did our morning birthday ukloo scavenger hunt before the older kids went to school. My husband worked from home in the morning so I drove myself to the chiropractor and went in with a bit of a limp. The Chiropractor didn’t notice anything unusual but when he finished I was able to walk without a limp. My leg felt totally normal except for the unexplained tingling that still remained.
After lunch I had a small birthday party for my son with 3 of his preschool friends. The rest of the day was normal until I picked Ari up from ball hockey at 4:30pm. When we were walking to the car I could feel my leg getting heavy. I took a break and held myself up against the wall in the Arena. One of the Dads asked if I needed help but I told him I was fine. I took a breath and tried to limp to the car. About half way through the parking lot my two oldest children propped themselves under my arms and let me use them as my support. We got to the car and I called the family doctor. Since it was my left leg I was able to drive so I dropped off the kids at home with my in-laws (who had just arrived in town to celebrate my son’s birthday) and I went to the walk-in clinic.
I parked the car in front of the clinic and went to hop out. My leg was worse than I thought and I dropped like a ton of bricks. Luckily there was a wonderful woman on the phone standing outside the clinic who saw me go down. She helped me up and assisted me into the doctor’s office. After waiting almost 40 minutes, the receptionist helped me into the room to see the doctor.
The doctor checked reflexes, colour, blood flow, and basically everything that my husband did the day before. He said that everything looked normal and he suspected that I had done something to my sciatic nerve. He said that it should return back to normal and if not I should go back in a week. He also prescribed me Cyclobenzaprine and Gabapentin which would help relax my muscles and hopefully help. After he left I called home for someone to come pick me up, then I called my sister, a physician, for a second opinion on the medication. My sister said not to fill the prescription unless I wanted to be “stoned” all weekend. I am very sensitive to medications and don’t normally take anything. She suggested just taking 2 Tylenol.
My husband made me another appointment to see his chiropractor because the doctor’s idea of waiting a week to see if my leg returned to normal just wasn’t going to work for us. I spent the rest of the evening on the couch and that night I was able to limp to bed so we figured the Tylenol helped.
I felt bad for missing my son’s birthday but he was happy to spend time with his grand parents. When I got home, my son opened his gifts and we all enjoyed his birthday cake.
My day was like any other day. After all the kids’ friends were gone I started dinner. As I was taking the dishes to the table I had a sharp shooting pain my left hip that went up and down my whole body every time I put weight on my left leg. I didn’t think much of it so I limped around and sat at the table to eat dinner. I didn’t find the need to say anything because I thought maybe I just pinched something in my workout earlier.
After dinner, my husband was feeling tired and sick so he went straight to bed. After all the kids left the table to do their chores I tried to get up. I realized at that point that I could not move my left leg. I couldn’t put weight on it or even wiggle my toes. I used my hands to support myself against the walls, At this point I thought, “hmm, this might be difficult” but still didn’t think much of it. By the time I reached the corner in the hallway I was just too exhausted to go any further so I had to call for my husband to come help me.
My husband was a little annoyed that he couldn’t get rest but when he saw me in the hallway he knew something was wrong. He helped me to the floor and started moving my leg. I could see the panic in his face. At first there was a sharp shooting pain every time he moved my left and right leg. Then it went away and I got a crazy sensation of pins and needles all the way up my left leg. I could feel every pinch and tickle everywhere on my leg. My left leg did not appear to look different. The colour was okay so we knew blood was flowing through it. My husband didn’t know what to do so he booked me an appointment online to see his chiropractor the next morning.
With help. I was able to move to a chair in the living room. My husband elevated my leg and kept moving it. After a few minutes I was able to wiggle my toes and movement slowly came back to my leg and toes. I eventually limped to the couch on my own and relaxed for another half hour before getting up and making a birthday cake for my youngest son’s 5th birthday.
My leg eventually felt totally fine except for pins and needles on the bottom of my left foot which was still present when I went to bed.