So, What is GBS?

What is Guillain-Barré Syndrome?

Guillain-Barré (ghee’-yan bah-ray’) Syndrome, or GBS, is a rare illness typified by the rapid onset of weakness, often accompanied and sometimes even preceded by abnormal sensations, such as tingling or pain. These various changes reflect damages to peripheral nerves, that is, nerves located outside the brain and spinal cord. Peripheral nerves, includes motor nerves to muscles that enable movement, sensory nerves from the skin and joints that detect texture, limb position, etc., and autonomic nerves that automatically regulate functions such as heart beat, blood pressure, pupil size, and a sense of bladder fullness.

GBS can occur at any time without warning. It varies greatly in severity from mild cases of brief weakness that may no even come to a doctor’s attention, to a devastating, life threatening illness with complete paralysis, respiratory failure and inability to swallow. GBS is rare. Most people have never heard of it, or if they have, know little about it.

Quoted from Guillain-Barré Syndrome, CIDP and Variants: An Overview for the Layperson (GBS/CIDP Foundation International, 10th Edition, 2010)

To know more, head over to Guillain-Barré Syndrome Fact Sheet at NIH’s website.

A short video explaining GBS.

I Have Guillain-Barré Syndrome

I consider myself as a fairly healthy person apart from the normal sickness that every normal person would get – cold, cough, fever, sore throat or headaches (which happens to me very often). I am 5 ft 3 and weight over 175 lbs. BMI categorised me as Overweight. I try to jog at least 5 km, at least twice a week. So, apart from these, I am considered healthy. And I am 32, according to my patient wristband.

Before Hospitalisation

On Friday after work, I went to the gym to run on the treadmill. It was just a normal workout night. I headed home after I was done. I don’t remember when I first felt the symptom, it could be on the same week itself. I felt tremendously uncomfortable as there was a constant numbness on my left leg. It just won’t go away. I first thought it must be the muscle that I strained while running on the treadmill.

The next Monday (Aug 8, 2016), the numbness is still there, on my left leg. I got very worried and I tried to Google with the keyword “numbness on leg”. Most results were relating the symptom to diabetes. Wait, diabetes? It got to be kidding me! Now, I am really scared. I went to a panel clinic located just downstairs of the office. The doctor said it should be some strained muscles and prescribed muscle relaxant to me. It causes drowsiness, he reminded me to take it at night. Okay, maybe I scared myself unnecessarily. I went to the gym again after work, thought to run off the muscle soreness. I took the muscle relaxant as prescribed and went to bed.

The next morning, I felt crappier. The numbness spread to my right leg. I felt drowsy and I remember my vision was not as clear as usual. I called in sick with my manager and drove myself to my usual General Practitioner nearby. Thinking back, I am amazed that I was still able to drive. I explained to my GP and he asked me to describe the look of the muscle relaxant prescribed to me yesterday. He too suspected nothing and suggested that the dosage of the muscle relaxant was too strong. He asked me to go home and sleep it off.

I remembered Mom woke me up for dinner. The room was dark, obviously because it was already night time. I don’t know what time it was. They bought me a 雞絲河粉 or Shredded Chicken Noodle. Mom called me to go outside and eat the noodle. I could not get down from my bed. My body was flimsy and weak. I could not even stand up. Dad rolled the chair and held onto me while helping to get me on the chair. Then, he rolled the chair with me back out to his study, where my noodle was. I took few spoonful of the noodle before vomited. I didn’t have the strength to hold the chopstick. Seeing how weak I was, Mom asked Dad to bring me back into my room to rest, thinking maybe the effect of the relaxant was not over yet.

On Wednesday morning, Mom woke me up, wondering why I was still in bed when I should be heading to work. She called me and I did not respond. I was trying to speak but no word came out from my mouth. I was told that I was slurring and could not make sounds that we understandable as speech. Worried that something is wrong with me, she called my brother to help get me down and send me to the emergency at nearby ParkCity Medical Centre.

Picture taken by Mom while I was in Critical Care Unit (CCU).
The most expensive item in my hospital bill, IV Immunoglobulin that costs RM38,000. Dr Guna recommended this to Mom and asked if she would like to proceed. Mom was thinking.. as if we have another choice. This is one of the two available treatment for GBS. It does not cure GBS but it will slow down the effect of GBS and accelerate the recovery.
The feeding bag of Kangaroo ePump, which pump liquid formula (milk) through tube in a specific interval.
RM17,000 Steroid!
Second most expensive medication, the RM17,000 steroid to treat my swollen cervical spine (neck).
The bright pink wristband with a prominent, bold 'Fall Risk'.
Friend bought this whiteboard for me to write do what I want to say as I could not speak and to work out my hand by writing. Mom left me a message on the board.
After 2 weeks, first time seeing outside world after my vision got better.
Simple thank you notes for the nurses that took care of me in the general ward and also in CCU. Gone is my nice and tidy handwriting. I write like Belle 🙁
My discharge summary with the final diagnosis that I could not even pronounce.
The interim hospital bill that had both of my company and personal insurance coverage exhausted.
My food while I was recovering my strength to swallow food - blended pork porridge.
Blended rice and blended vegetable for dinner.
Upgraded to soft food! No more blended food.

During Hospitalisation

Day 1 (Wed, Aug 10) – Aug 10, I was admitted to the emergency. My memory was a little fuzzy. I remembered being wheeled into the emergency, did some scans (CT scans and X-ray). I was asked to try crawl onto the bed of the imaging device (I think I had some CT or X-Ray done while in the emergency). I did not have much strength to push myself from one bed to another bed. The nurses were being careful to prevent me from falling down. They asked me to remove my necklace and earring which I had difficulty in doing so because of the lack of strength on my arms. Then, they informed me that they are going to change me into patient gown. I remember nodding in response.

I was first diagnosed with Brain Stem Stroke because of my symptoms that were very similar to stroke patients. That was before the result of my brain MRI; which showed no abnormality in my brain. Thus, ruled out stroke. I was then admitted into Critical Care Unit (CCU – which I think is much more serious than ICU).

That was Day 1 of my hospitalisation… that I remembered. The rest are the events related back to me.

Day 2 (Thu, Aug 11) – I had fever and Dr. Guna told Mom that my condition was not stable. She started the treatment with IV Immunoglobulin; which was a 5-day course, every 7 hours. I was sent for MRI on brain and whole spine.

Aunt Shirley visited me. Mom told me that she cried after seeing me lying motionless on the bed.

Day 3 (Fri, Aug 12) – Second day of IV Immunoglobulin. Speech therapist came to assess me whether I can take food orally. Unfortunately, no. Throat muscles was weak and affected my ability to swallow, even soft liquid. They had to fix a tube down to my stomach from my nose. Ouch. Luckily I was unconscious and didn’t have to feel how it is like to have a tube stuck into my nose and pushed all the way to my stomach.

MRI results are expected to be available by tomorrow morning. I was not able to speak, open my eyes (lift my eyelids), or move my body but I was told that I did give responses when they talk to me.

Family and close friends visited me in CCU. I knew who came and heard their voices but could not see, part of because I was not able to lift my eyelids and even if I can, I do not have my glasses on. Most of the time, I was feeling drowsy.

Day 4 (Sat, Aug 13) – Juliana, the dietitian came. She recommended to give me 275ml of high nutrition milk 6 times a day, through tubes of course. Nik Azreen, the physical therapist came as well. Not much of improvement as the left side of my body was still weak.

Day 5 (Sun, Aug 14) – I was in and out of consciousness. I got agitated and frustrated. I was sad for not able to express myself. A little improvement but still can’t speak, able to lift my hands and legs. Fever down and MRI results were out. MRI showed enhancement on my cervical spine (neck) and nerve root around my shoulder. In layman term, the spinal cord was swollen due to inflammation.

Day 6 (Mon, Aug 15) – Last bottle of IV Immunoglobulin. Lumbar puncture (or spinal tab) was done to collect a small amount of cerebrospinal fluid. Liquid nutrition was given through pump as I vomited each time it was given to me, since yesterday. It’s called Kangaroo ePump feeding. It’s kind of automatic feeding machine that will pump the formula at a set interval.

Day 7 (Tue, Aug 16) – I was given a type of steroid called methylprednisolone (brand name: Solu-Medrol) for the swollen cord. Doctor said I can be transferred to the general ward the next day but Mom requested to stay in CCU until Thursday. There was improvement on my physical strength, hands and body movement. Eyes movement were good too. The therapist assisted to a chair nearby and sit for a few minutes.

Day 8 (Wed, Aug 17) – Still on pump feeding. Physical therapy was going well. I was emotionally unstable as I could not stop crying whenever I see Mom. I guess I was angry at myself for this to happened.

I was more aware of my surrounding even though I still could not see clearly without my glasses. I could only see faint outlines. I remember this day very much because I think I threw a bit of tantrum. Doctor told Mom that because of my damage nerves, my body could not control the temperature. Hence, the sudden coldness and then heat the next.

That night, I sweat a lot and heat was unbearable. I tried very hard to get the nurse’s attention. As I was not able to speak like a normal person do, I tried to make some noise by knocking on the bed frame. I did it for a very long time before I managed to get the attention of one of the nurses. I believe it was around midnight or early morning, around 2-3 AM. She asked me what’s wrong. I tried to make the word but she could not understand me. I tried English, I tried Malay. It took them more than 10 minutes to finally make what I want to say – “Hot” and “Panas”. They got me a standing fan and I remember having a good night sleep.

Day 9 (Thu, Aug 18) – Pump feeding was removed but still on bolus feeding until my throat muscles are strong enough to take food orally. The day I was transferred to the general ward. Doctor requested to put me in a single occupancy room to avoid getting infection from other patients. I was given antibiotic, 3 times a day through IV.

Day 10 (Fri, Aug 19) – Vision is getting better but I see double. Dr Guna asked Dr Sanjeev the eye specialist to check on me. Throat muscles were not strong enough, the tube is to stay! 🙁

Day 11 (Sat, Aug 20) – Frustrated because I can’t even do a simple task on my own. Dr Sanjeev came to my room. He asked me to explain to him what I see. Unfortunately, he can’t understand me. I spoke single word or short sentences with 2 to 3 words to explain myself. He still can’t understand me but I was surprised that the nurse was able to understand me and she relayed it back to Dr Sanjeev. He got the nurse to put some eye drops 4 times a day. It was to dilute my eyes.

Day 12 (Sun, Aug 21) – Fearing that I might not be able to have the tube remove when I am good to back home, the nurse taught Mom on how to feed the formula milk through the tube. Dr Loh, the speech therapist assessed me and said that I am recovering well. Nik the physical therapist came with a walker. She let me try to walk using the walker from my bed to the sofa and did some exercises while standing to strengthen my leg muscles.

Day 13 (Mon, Aug 22) – I was craving for 100 Plus. Haha! But I had hard time telling Mom. The ‘100’ and ‘Plus’ seems hard to pronounce. I tried too hard and got frustrated at myself. Mom had to calm me down. I almost want to break down crying.

In the hospital, I had to wear a pink bracelet with the words ‘FALL RISK’. I turned the bracelet so that I can only see the word ‘RISK’. I fully understood that I was a fall risk, but couldn’t help feeling insulted.

Day 14 (Tue, Aug 23) – Dr Guna allowed me to discharge on Thursday, once the antibiotic is done but she suggested to wait for Dr Loh to assess me first, to decide whether the tube follow me back home or it can be removed. I had to bear with that thing in my nose for another day. I had blended vegetable and porridge; and blended watermelon juice for dinner. Sometime later, I vomited red stuffs. It was the watermelon.

Ann, Louise and Rachel came to see me.

Day 15 (Wed, Aug 24) – Finally, shower time! Mom bathed me with help from Ann. I felt so refreshed! Minzhi, Rachel and Steven came to visit me. I did not talk much. Mom did most of the talking with them because my speech was limited. Before leaving, Steven asked Mom if he can say a prayer for me. He’s a Christian.

Day 16 (Thu, Aug 25) – I told Mom that I want to go home. She told me that I have to work hard and get better quickly before Dr Loh see me tomorrow and give me a green light to go home. I nodded.

Day 17 (Fri, Aug 26) – Dr Loh came with Juliana, the dietitian. Dr Loh assessed me by getting me to drink water and Milo. She used the stethoscope on my throat. After discussing with Juliana, I was allowed to go home without the tube. Yay!

Mom started to pack my stuffs and brought some to the car. She bathed me and put me on my own clothes while waiting for the billing. I was so excited and could not wait to be home.

Sadly, I had to stay for another night due to the delay with my insurance.

Day 18 (Sat, Aug 27) – After a long delay, I can finally go home. I wrote 2 simple ‘Thank You’ notes – one for the nurses in the general ward and one for CCU. Before leaving, Ann wheeled me to CCU to personally thank the nurses there. Mom told me that the nurse asks me to come down to CCU when I get better. This was the first time I had a good and clear look of CCU.

After Hospitalisation

I think I have motion sickness. Mom was driving my car. My vision was still blurry. While in the car, I felt dizzy. My head kept swaying forth and back, it seems like my neck was weak and could not hold my head in place. The distance from the hospital to my house is just 2km and took a little more than 5 minutes.

My new temporary bed
My new temporary bed

Dad and Brother had set up a bed on the ground floor for me as I could not climb the stair yet. They also bought a new set of air purifier and placed it near my bed. As my autoimmune system and antibody was weak, I need a clean environment.

My family had expected me to be home yesterday. My grandparents, Aunt Shirley and Xiu Jin was there. I was overwhelmed with the feeling to be home after being confined in the hospital bed for 3 weeks. The smell of fresh air outside. Okay, not so fresh. I heard there was haze.

I need to go back to the hospital for physical and occupational therapy, 3 times a week.

While I was in critical condition, I know that a lot of friends and family were praying for me. I was told that friends of friends from as far as New Zealand went to a temple to light a lamp and prayed for my recovery. 姑丈 was in Cambodia when I was hospitalised. He went to a temple there to pray for me as well.

I sincerely appreciate and thank you for all the well wishes. I hope that someday I can repay in any way for the kindness that was offered. To close friends that supported and helped Mom while I was hospitalised as well, a big THANK YOU!

The Diagnosis

It was Encephalomyeloradiculitis, GBS. GBS or Guillain-Barré Syndrome, a rare disorder in which the body’s immune system attacks part of the peripheral nervous system and damages our nerve cells, causing muscle weakness and sometimes paralysis. It’s thought that after you’ve had an infection (in my case, I don’t remember getting any kind of infection or sickness), your immune system loses the plot and attacks your nervous system.

I couldn’t find any reference or information on encephalomyeloradiculitis. So, I asked Dr Guna during my next check-up. Based on her explanation, it was my actual diagnosis. Encephalo- means of or related to the brain; and myeloradiculitis means inflammation of the spinal cord and the spinal nerve roots. My symptoms (muscle weakness, double vision, inability to speak and swallow), it indicates GBS as well.