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The Faces of Guillain Barré & CIDP Summer Edition- Syaza #101

Friday, June 29, 2018 0 Comments


Hi, I’m Syaza Wazir from Kedah, Malaysia. I am a previously healthy 23 years old, striving for my degree in medicine at a local medical school, with the hope of becoming a doctor. I was very active, love outdoors and doing all the sports under the sun. I was doing quite well in med school too and mange to sail through and complete my 4th year.

It was on May 2017 that I believed the first symptom appeared. I was doing my elective posting at the Emergency Department and noticed a strange feeling in both my big toes. They were feeling tingly and kind of numb, like the feeling that you get after sitting on your legs for too long. But I brushed it away, thinking that the hustle of ED posting was causing it as I had to be on my feet for almost 10 hours and it was the month of Ramadhan, meaning I’m fasting. Also, I had just got a new pair of shoes for the posting, so I thought that it might be due to that too.

About two weeks after that, I started having this deep aching pain between my shoulder blades. Again, thinking that I might be too tired, I just bared with it. After all, I am an active healthy 23 year old, what could go wrong right?


Then, came August. It was time for me to register for my final year of med school. I was nervous at the same time, excited for the year. I was moving into a new apartment with my friends and also starting my final year of
my degree. A few days before going back to my college, I took a flu shot, since I’m a person who easily gets sick so I thought the shot would help.

Few days after, I was watching a movie with a friend when suddenly I felt a sharp stabbing pain at my upper back. At first I thought it was just a cramp due to my poor posture. It first came and went away but then it got
worse in the evening. The pain was so bad that I can barely move, or breathe. I could also feel my temperature rising. I fell asleep then woke up with a fever but the pain has reduced.
The next day, the fever did not subside and I was feeling weak. I went to the ED and was sent home with antibiotics and Paracetamol with a diagnosis of viral fever. The next day, I woke up with a deaf left ear. I was
still having high grade fever and I was hallucinating. I was seeing things that were not there. However, I just took my meds and rested.

The next day was my 23rd birthday. I celebrated with having IV drips at the GP clinic. My lymphocyte counts were getting higher and I was getting so dehydrated. I was not eating well either.

Two days after, still burning with what seemed like the worst fever of my life, I suddenly had pain in my abdomen. My friend drove me to the ED and I was finally admitted since my liver enzymes were all deranged and I was showing signs of shock. So I was placed in the surgical ward as they first suspected me to have acute cholecystitis, which is an inflammation of the gall bladder, and scheduled me for an ultrasound the next day.
However, the ultrasound result was clear and the doctors were puzzled because I was still having the symptoms and my blood test results weren’t improving despite given two types of antibiotics and painkillers.


During my stay in the surgicaI ward, I remembered feeling severely tired towards the evening, I was having terrible headaches, pain in the eyes, in the neck, in my back and was feeling weaker as I find it more and more
difficult to get out of bed.

On the 8th day of admission, I woke up from my afternoon nap and suddenly realised I can’t move my face. My tongue and lips felt weird and I can’t close my eyes shut. Being a medical student, I know this was very wrong.
Something was totally wrong. I asked my friend to call the doctor on duty and she checked my calcium and  electrolytes and they came back normal. At this time, I was already having difficulty swallowing and my speech
was slurred. The doctors finally decided to refer me to the medical department. They first suspected me of myasthenia gravis because of the facial paralysis. The rest was all a blur. Words like possible MS, Lupus, thyroid
problems, were getting to my ears and I knew they were no joke. They ran numerous blood tests and also scheduled me for a chest x-ray and a CT scan of the brain to rule out other causes and they came back fine.

The next day, the doctor came and told me that it might be Guillain Barré Syndrome, since I had a history of flu shot and I had a history of flu like illness. They told me that they will need to do a lumbar puncture to make the
diagnosis.


On 29th of August 2018, I got the diagnosis of Guillain Barré Syndrome as my CSF protein was high and my symptoms fit the diagnosis. I was immediately admitted to the ICU as they were anticipating respiratory failure as I was getting weaker and weaker by the hour. By this time, I wasn’t able to sit unsupported, stand, or walk anymore. I couldn’t do the basic human things without the help of my parents or the nurses. I couldn’t swallow, so they inserted a nasogastric tube. I couldn’t pass my urine as well, so they inserted a catheter. My whole body was hurting but I couldn’t move. My breathing was getting faster and laboured, my heart rate was high and my blood pressure was all over the place. I started to realise that I’m slowly getting worse and I was so scared about just how much worse things could get. I knew how the disease works as I did study it as a medical student. I was now then attended 24 hours a day, being bathed, fed, turned over, dressed, and  cleaned, just like a baby. As a young active sports fan, I lost my dignity, privacy and independence just like that,
in a blink of an eye. On top of that, I had to deal with the numbness and pain 24 hours, seven days a week and I would admit that every day was a challenge, not just for me but also the people who cared for me. Thankfully
the only part of my body that was not affected was my chest which meant I avoided mechanical ventilation. I was given IVIG for 5 days and was then transferred to the ward. I was prescribed Gabapentin for the nerve
pain, Tramadol which is another pain killer, anticoagulant shots, antacids for my stomach, suppository Dulcolax for my bowels, and TED stockings to prevent blood clots since I was not ambulating. They also used a specialmattress called ripple mattress to prevent me from getting bed sores.

Once the flu like symptoms started to improve, I was able to begin my road to recovery. I would say that it was many long days, tears and isolation. I remembered just staring at the clock, waiting for time to slowly crawl by.
However, with that being said, I just want everybody to know that my parents and nurses who cared for me were the angels here on earth. The doctors were great , but the people who help you bathe when you can't
bathe yourself, feed you, help you believe you WILL walk again provide you with what you need to go that extra step literally. When they rub your legs, wiped your face and let you cry because of the pain you know THEY understand you.

Three weeks after being admitted to Hospital Putrajaya I was then transferred to Hospital Sultan Abdul Halim, Alor Star, Kedah where there is a rehabilitation unit. It was there that I relearnt how to do all the things I lost due to GBS. From sitting to eating, to talking and walking. Trying hard to close my eyes.


 I spent a total of 6 weeks at this hospital. I contracted hospital infections due to prolonged hospital stay therefore I was advised to go home. On 22nd of October 2018, I was finally discharged, still in a wheelchair and my journey of recovery continued.


I was so determined to be able to get up and walk for my brother’s wedding in December 2018 so with the support of my family, I trained hard to focus on gaining back my strength, coordination and balance. I went to
physiotherapy, occupational therapy and speech therapy 3-4 times a week, pushing myself each day, taking each day as it comes and setting myself personal goals. And luckily enough, with God’s will, I did manage to walk with the help of my quad cane on my brother’s wedding.


Between then till now, I’m still fighting my battles, improving day by day. I can now walk without support but still having balance problems. My speech still needs work. I’m having chronic fatigue and also numbness and tingling, twitching and spasm here and there from time to time. I continued to have facial pain whenever I was hugged, or there was pressure put on my face. I constantly hear a thudding sound, and everything is louder in
the previously deaf ear. My smile is not the same anymore. But overall, despite fighting such a long and difficult battle, I feel that I’m winning, slowly but surely. I’m now determined to strive to continue where I left off with my studies and pursue my dream to become a doctor. Im going to try my hardest to complete my degree starting this August 2018.
This journey has taught me so so much about so many things.

I am also tremendously grateful for the people I have in my life, especially my family and friends. To my family, thank you for the unconditional love, the never ending support, the limitless patience, sacrifice and energy, also the countless money and time spent on me. I will never ever be able to get through this without you guys. To my friends, thank you for the prayers and support, the effort to do a fundraising for me and to hold solat hajat for my recovery, for the visits, the calls,
and the words of encouragement. Thank you for the people who smiled at me when I couldn’t smile back, for feeding me when I can’t feed my self, for wiping my face when I couldn’t lift my hands, for squeezing my hands when I couldn’t squeeze back, for making jokes and trying to cheer me up although I couldn’t laugh to them, for just being there with me throughout the journey,
THANK YOU.

The Faces of Guillain Barré & CIDP Summer Edition- Elizabeth #100

Friday, June 15, 2018 0 Comments



Hey, my name is Elizabeth Landrum I was diagnosed with CIDP in August of 2016. I'm from New Orleans, LA.

I was a healthy 35 year old when my symptoms started, beginning my training to become a yoga instructor. I woke up one morning in late June having numbness in my hands and feet, and noticed that I was a little clumsy, nothing too alarming yet. It started to spread, but I think I was in denial that something was seriously wrong until I tried to run and it was spastic and difficult. I made an appointment with a PCP who then me an appointment with a neurologist. I was diagnosed pretty quickly with an EMG, but needed to admit myself to the ER for a spinal tap and a loading dose of IVIG.

My first treatment was horrible, I was sick with flu like symptoms for a week. My first treatment was in August and I didn't have another one until October. I was still declining, and unable to see one neurologist regularly that was familiar with my case. I stopped working right around Halloween, my balance was really bad and I started using a walker and wheelchair. Eventually I pulled some strings to rectify this situation, but it's sad I had to. My neurologist confirmed that I was getting worse and apologized and gave me his phone number if I ever needed him for questions. He thought IVIG wasn't working on me so we started once a week IV steroids. This only gave me temporary relief, so I then started daily Prednisone. The oral steroids were beginning to work, but my family wanted to get a second opinion. So we went to
UT in Texas a center of excellence for CIDP, and they agreed with my diagnoses, but wanted me to start IVIG every week and remain on 60mg of Prednisone.

Ever since then I have been improving very slowly. I don't know what triggered this disease, but it's crazy how fast it disabled me and long it is taking for my body to heal itself. But I will beat it!!!

I'm still on a walker and wheelchair for long distances, but I see improvement every time I go to physical therapy. We've spread out my treatments from weekly to every four weeks and 60 mg of Prednisone to 7 mg. I loathe this disease and I can't believe it's been almost two years of me dealing with it, it had been really hard. I luckily have a great family and boyfriend who stuck with me through this.

I have CIDP it doesn't have me! I will win!! Never give up!

Drew Brees and I January 2017, I wasn't doing well at all here. But my friends came to get me so I could meet him.