The Faces of Guillain Barré & CIDP Summer Edition- Julianna Update

You can read Julianna's original stpry from last year at this link.

What do kids classify as normal? When I was in 6th grade, my definition of normal was walking in the hall with my friends, listening to music, and thinking I was cool because I had more independence than I did in elementary school. I considered myself completely normal until December 4th, 2014 when I was diagnosed with Guillain Barrè Syndrome.
 
   It all started on Thanksgiving day. I had a nice dinner with my family at the aquarium buffet. That was a tradition for our family since the rest of our family lives more that 500 miles away. After dinner, my mom, dad, and I went shopping at Target, like we did every year, and my legs started feeling really tired. My feet felt like they were asleep as the feelings of pins and needles creeped up my ankle. My mom figured I was just tired and we went home. 2 days later, the weakness continued and rose to my knees. My mom decided to take me to the ER because she is a nurse and she knew something wasn’t right. The ER doctor ordered a chest X-ray and blood work all which came back normal. I was diagnosed with a pinched nerve and sent home with bed rest and low dose painkillers. The next day, I woke up completely paralyzed from the waist down.

    I was referred to a neurologist, on December 4th, who ran many test including an MRI, EMG, and a spinal tap. The whole day is fuzzy in my memory , but I remember yelling at the nurse performing my EMG to stop even though I couldn’t feel a single thing. We had to go to a different hospital for the MRI and spinal tap, I remember screaming and fighting my mom in the car because I did not want a needle in my back. I didn’t have a fear of needles, especially after watching a nurse shove what seemed like 3 inch needles in my small legs. But I only accept needles when I can watch where the needle is going. I think it’s a mental thing, or maybe a trust thing. I mean if you were 11 years old, who would you trust? Lucky for me, the hospital my mom and I went to didn’t have a doctor comfortable performing a spinal tap on a child. My mom was so mad, but I was in the corner with a grin on my face while the tension was released and I was released. The MRI was fine Bc I mainly slept, I couldn’t move anyway. At the end of the day, the neurologist called my mom and told her that I had Guillain Barrè Syndrome.

   The treatment plan seemed easy at first. I was going to have a 5 day infusion of IVIG then a one day dose every 3 weeks until i showed improvement. The best part, I was able to do my treatments at home with a home health nurse! I started my 5 day infusion and returned to school in a wheelchair. Remember how I described my 6th grade reality? Well it was completely shifted up-side-down. I was no longer independent. I was embarrassed and frustrated. One of those 5 days of my treatment was my birthday. It was on day 3 and I was tired, sick, and depressed. I couldn’t even finish my birthday dinner or cake. I was also told that I may never walk again . I’d say that was one of the hardest days of my treatment.

   
  After Christmas, I had a follow-up EMG. It was very painful. But that was the best part. The test being painful meant that I once again felt my legs, and could start physical therapy! I took my first steps and got stronger and stronger every day. By spring break I could even take a few steps on my own.

      I got stronger and stronger until around the beginning of May, when I started feeling weak again. It wasn’t like paralysis, it just felt like everything was harder. Walking felt heavy, even breathing felt exhausting. My physical therapist used to yell and shame me for not trying harder. It’s not that I wasn’t trying, it’s that it literally felt like I could not do it. That is when my doctor diagnosed me with CIPD and told me for sure I was never going to get better.

    My parents were not going to accept this. They were already not happy that I wasn’t going to a children’s neurologist, instead I was going to a adult neurologist. That was because of insurance. So after weeks of fighting, I finally got an appointment with a neurologist at Texas Children’s Hospital. The doctor gave me a whole new perspective with new treatment plans and gave me hope. . I got a service dog, which really was just my big dog at home who is trained to do little things which helped me. But hanging out with an animal really lifted my spirits. I got stronger and stronger and once again was strong Enough to walk. I ditched my walker at school at the end of my seventh grade year and walked out of school for my last day of school.

 
  I  am now a freshman in high school, I am on my schools color guard team, and I’m doing very well academically. Guillain Barrè Syndrome changed me in many ways. It taught me keep fighting no matter how hard the battle gets. It taught me to find the good in a horrible situation. There’s always an upside to a terrible storm. It taught me that it’s not about the size of the dog in the fight, but rather the amount of fight in the dog. It inspired me to go into medicine once I graduate high school.

   

     Yes it flipped my reality, it flipped my definition of normal. But I learned from it and are a better person because of it. My name is Julianna Jones, and I survived Guillain-Barré syndrome.

The Faces of Guillain Barré & CIDP Summer Edition- Elizabeth G. Update

My GBS Journey Part 2

Last year when I wrote part one  http://thegimpygirlwhocould.blogspot.com/2017/05/the-faces-of-guillain-barre-2017-day-10.html?m=1 I was 52 and only about 4 ½ months into my recovery from Guillain Barre. We had gone to our annual black-tie event, the Make A Wish gala, and I was in the wheelchair. I was starting to walk again but very carefully and not far—more like if I needed to use the bathroom, I could get in there with the wheelchair but then step to the toilet. Which was huge progress. I had pretty high expectations, in reading what I had written. I had been hoping to be bike riding, gardening and boating—basically, ‘normal’ by that summer.

Make a Wish Gala 2017

Well, fast forward a year and I am still recovering at 16 months out. I am 53 now, and definitely have had huge improvements. I did three more rounds, 5 days each, of IVIG in April, May and June of 2017. I ditched my wheelchair in June completely, though we have it, just in case. The stair lifts were taken out in July, so that’s when I really started using the stairs—no choice! I still have to hold on to the bannister but I am up and down all day long.

In July, I was having terrible back pain, and realized that now that I was walking, I had never had my hip rehabbed—the hip replacement that started this whole thing by triggering GBS. My muscles were so tight it was pulling my lower back way out. So, back to PT this time with the focus on my hip, and that helped immensely. At this time, my blood pressure was all over the place—spiking a lot, so I was put back on 2 different meds for that. GBS really screwed that up for me. In July, I also started to drive again! I still won’t drive a long distance, but I am comfortable around town. What a HUGE sense of independence that gave me.

I wasn’t gardening, much…I puttered but I was wobbly and certainly couldn’t kneel—not sure I would have gotten up! In June, we adopted a new rescue, a 7 month old wild, not trained, black lab named Otis. Our dog Brodie wasn’t sure what hit him and was not thrilled at first, though now they are best buds. I’m not sure what the hell I was thinking, lol, because it was a challenge, to say the least. But we love him! I didn’t start going on the boat until late August, and I didn’t do much but sit and enjoy, but it was great!

In July, my company, Earth Mama, eliminated my position. It was a huge blow. Financially and emotionally. I was the director of sales and really loved that company and the owner. They gave me a very large severance, which to get, I had to sign a release saying I would not sue them. I probably would have had a case, disabled and over 50 woman…but elected to sign and just walk away. My husband said I needed to take some time and focus on me and rehabilitation and recovery. So I did! Once PT ended, I joined the YMCA and started silver sneakers classes.

In November, I started working as a consultant, and now have 4 companies I am working for and I’m really loving it. If I need to go to a class, or a walk, or take a nap, I can! We spent the winter going to Vermont on the weekends. My husband had hoped I’d be cross country skiing….that did not happen, but I snow shoed! One day, over 4 miles, which was actually a mistake because I got on the wrong trail. I was shaking from fatigue, but I did it. I learned if I fell in the snow, I could get up by myself—good to know. I started walking both dogs together, and now every day at lunch we go for a walk. Not far, because my endurance still isn’t great. But we go! My vertigo finally went away for the most part so I am hopeful I’ll be biking. I think that with a kneeling bench, I might be able to garden. I certainly do so much more now—I can clean the house—just not all at once. I can grocery shop, as long as I have rest time after.

My Rheumatoid Arthritis is still not under control and we are struggling to find the right combo of medications for me. My rheumatologist doesn’t want me on biologics because they can cause demyelination. Since my legs/feet are still demyelinated and damaged…well, that could be bad. But I think I’m ready to risk it. My RA is bad in my feet, and I think it’s impeding my nerves healing, so I want to try Xeljanz, which I know some other GBS survivors that have RA are on with great success. I started Plaquenil in January, so am now on two RA meds and prednisone, and my RA is still not managed. Sadly, often the case for most of us with RA. The combination of RA and GBS isn’t fun.

I live for the day that my feet don’t feel like blocks of wood, and no prickly, pins and needles feeling. 16 months with no let up is getting old. The good news is, I have weaned totally off opioids, and am in process of weaning off blood pressure meds. Can’t stop the Gabapentin, I know that from missing a dose! Yikes! I am still way too fat….2 years plus on prednisone has me in steroid induced cushings, but that is reversible if I can ever wean off prednisone. I am doing the Keto diet, but so far only one pound, but, that’s recent so I’m seeing movement at least! I am about to start CBD—just waiting for my package to arrive. I figure, it’s worth a shot!

So, here we are a year later and this coming Thursday I will be flying for the first time since this whole mess started. We are going to Florida for a quick trip to see my parents, just 4 days, but I am excited. I’m a little nervous too, but I put us in the more space seats on Jet Blue and am doing wheelchair assistance. My Mom’s health isn’t good, and I told them to please not plan a million activities—Mom can’t do it and it will be too much for me! I suspect travel will take it out of me a bit. Then the following weekend we are going to the Make a Wish gala up at Mohegan Sun Casino. I found an outfit that I can wear with flat shoes that I think actually looks nice, and I’ll be walking, not in a wheelchair!

Overall, I know I am doing well. My neurologist said, at our last appointment after my last EMG, that he now considers that I HAD Guillain Barre, but now, am recovering from Guillain Barre. All the damage was still from the initial event. They can tell by patterns. Pretty cool. He said he is sure that my RA is impeding healing—inflammatory disease will do that. He also said that considering everything I had going on, Rheumatoid Disease, a hip replacement, three days later, hit with Guillain Barre and unable to walk within a day, then pseudomonas in my hip incision so on major IV antibiotics for almost two months, that I have made a remarkable recovery. He said the word remarkable three times, so, I guess it’s true. I get frustrated, wanting to do more. I remind myself and my husband that I will never be totally ‘normal’ again.

Make a Wish Gala 201

Even if I completely heal from GBS, I have that pesky RA and there is no cure for that. I’m independent, don’t need help for much, can manage the dogs when I need to, can just DO things. So, considering where I was a year ago, I am so, so happy!

The Faces of Guillain Barré & CIDP Summer Edition- Ashley #102

In November my junior year of high school I contracted strep throat. It was the same week as the regional competition for my varsity cheerleading squad and as a classic type A perfectionist I wasn’t going to let it keep me from competing. I refused to go to the doctor fearing that he wouldn’t let me compete. My mother says that she still remembers the fight, and the moment she decided to let me win. I should have listened to my mother.

This is me before I got sick. It was a cheerleading competition that was my excuse for not treating an infection believed to be a catalyst, so I thought this was fitting

The first week of December, I believe it was on a Thursday I woke up and my left knee had swollen to the size of a grapefruit. We all assumed it was a stress injury or that I was tired from my hours of squad practice, on top of tumbling and stunt practice, as well as routine cardio and weight training. Since I was busy that week with an event I had planned for another club I chose to ignore my knee. I was a smug and overambitious teen. Within a few days my whole leg was swollen, a few days later it was purple, and by the next week the swelling had moved to other joints throughout my body and I was struggling with memory loss and brain fog. In a matter of a couple weeks I had become too weak to walk, and couldn’t even lift a mug, let alone toss my friend in the air above me. I watched my team compete in the state competition from the sidelines as my body was slowly falling apart. In one month I lost 15 pounds from my petite 5’4” frame and we had no idea what was happening.

This was in the early 2000’s. I went to hospitals, doctors, specialists and the best they came up with was to give me arthritis medication. My pediatrician finally was willing to think outside of the box a little and tested me for strep. Oh yeah… we had totally forgotten about the strep. We now know that the infection went haywire in my system since it was untreated and settled into the weakest parts of my body, which for me at the time were my joints. This is one of many small miracles in my life, as the infection never made it to my heart, so I am still here to type this. They gave me a bunch of antibiotics and my pediatrician and my mom decided to try homeopathy, as they had no idea what else to do. I never fully recovered from that infection and started to show signs of autoimmune and immunodeficiency but it would be over a decade before I had any answers.

In the spring of my senior year of high school, just as I thought my health had stabilized and I was ready to head off to college I got mono, really bad mono. They discovered that I had it because I broke out in heinous hives all over my body, which I learned is a rare mono thing. This was days before my senior prom, for which I had bought a very sassy and short salsa dress and fabulous shoes. This was the first time I had to rearrange my plans last minute because of my health, something that I have now mastered as an art. In my closet I had an old floor length homecoming dress that came with a satin wrap. I wore that with elegant gloves I borrowed from my mom to hide my hives and flat sandals because my feet were too swollen to fit in my fabulous shoes. It was my senior prom… I made it work. This mono infection sent my to the hospital more than once and was followed by a surgery to remove a cyst from my uterus. I also graduated from high school during all of this. We don’t really know, but it is believed that these infections and stressors on my body were the catalyst for me to eventually develop CIDP.

The fall of that year I moved to Boulder, to start my journey at the University of Colorado. My first week of college I had three different infections, and my health continued like this. I know now that I have a primary immunodeficiency and later developed a common variable immunodeficiency from so many infections, and was born with other immune problems. My health continued to be poor, but my perfectionist personality was louder, and in my mind I had convinced myself that I was healed as long as I took care of myself. This kind of worked for me until the second semester of my sophomore year. While taking a biology exam one evening my left leg and foot started to twitch, and by the time I got up to turn in my exam I had a slight limp. These spams continued in my legs and arms, but I decided not to tell anyone. It wasn’t until a few days later while at the climbing gym was I busted. I used to love climbing, well, bouldering to be specific and was pretty good. However, on this particular day I was falling off of every single route. Even the warm up routes were too hard for me. My boyfriend of the time walked up to me, looked me straight in the face and told me to grip his hand. I couldn’t, and so off to the hospital we went. Everyone thought I had suffered a stroke since all of my symptoms were one sided, but the test results came back normal and I was discharged with no answers.

The spasms continued and over time the damage to my nerves become more and more noticeable. I also started having seizures, but they were not epileptic. As I continued on with my studies my health fluctuated like a heartbeat. I would be okay and then I would suddenly fall apart completely, unable to walk, in desperate pain and developing more and more symptoms all the time. I went to the doctor a lot, and the hospital. They all concluded that I was making it all up for attention. So I went to every alternative doctor I could find, acupuncturists, herbalist, massage therapists, reiki, medicine men, chiropractors, witch doctors (seriously), yoga therapists (this is how I ended up becoming a yoga teacher) and bought a whole lot of snake oil. I also drank scorpion tea once, but for real… it was awful, and didn’t help. I had one doctor tell me that I needed to rewire my brain and that it was simply mind over matter. I spent the next several months studying neuroplasticity and squeezing my friends hands in class, calling my mom and having her just start talking and all kinds of strange things to “distract my mind from the pain”. Neuroplasticity is super cool, but it didn’t help.

In 2009 I graduated and became a full time yoga teacher, barista and retail employee, because it was 2009 and I have a degree in Cultural Anthropology and French language. I lost a lot of barista and yoga teacher jobs because my health would suddenly collapse. I continued to ride the rollercoaster of the unknown and eventually stopped going to western doctors all together after I was told that I would no longer be treated unless I took antipsychotics, antidepressants and a bunch of other stuff that gave me horrifying side effects. They did not do a mental health evaluation at that time and I have since confirmed that I do not suffer from psychotic episodes and was correct in refusing the medications. However, that was then and those were my options. When I was in an okay spell I worked and saved money, I exercised to build up strength, I got ready for the crash I knew would come. When the crash came I nursed myself back to health with the help of family and friends.

 This was my 21st birthday and right around when my CIDP symptoms started to show up.

Then I met Lee. In 2013 I met not only the person of my dreams, but also the person who would be the catalyst to me getting diagnosed. When we met I had been in a good phase for about a year, maybe two. My interstitial cystitis was off the charts bad, but I had been told years before that my bladder just did that, so I thought I was mostly fine. Then maybe 5 months into us dating I had a massive neurological attack, and totally fell apart. Normally this is where people run, but Lee didn’t run. He asked me if I would give seeing doctors one more chance. I put up a fight but eventually agreed. At this time my bladder frequency averaged 50-70 times a day, so we started there. I found a doctor, made an appointment and went in. For the first time in my whole life, she listened to me. They did a scope test and diagnosed me with a whole bunch of bladder and pelvic problems, which I am still working on and learning about today, but the most important of them was Interstitial Cystitis. This meant that I officially had an autoimmune disease and I was suddenly legitimized as a real patient with real pain. I was weeks away from my 27th birthday. She realized that I needed to see someone about my immune system issues and sent me to her colleague who has been my immunologist ever since. After a few months working with him he realized that I needed to see a neurologist and referred me to one of his colleagues. I had seen over 10 neurologists at this point, all of which had concluded that I was crazy, but I promised a cute boy that I would give it one more shot, so I made an appointment.

I don’t remember the details of it all, I remember I was very sick, I was walking on forearm crutches, my feet were sickled, I was in horrible pain and I couldn’t stop having non-epileptic seizures. This neurologist and his staff saw right away that something was wrong. They did CT scans, MRIs, nerve conduction studies, biopsies, eegs, and who knows what else. Then in March of 2014 when I was 27 years old my neurologist told me that I have CIDP, and that he was going to start me on IVIG, which would hopefully stop the deterioration. We left that appointment in total shock; there was something wrong with me. After everything I had been through, I was right after all. I received my first IVIG treatment in April of 2014.

This is me and my partner Lee the day before I started my IVIG therapy. We were at my grandmother's house for Easter, I had been diagnosed about a month before with CIDP.

This was from my first infusion of IVIG. I was so afraid of the bubbles in the medicine, but once my nurse told me it was normal I decided it looked like champagne and that I was going to like it.

 I have had to get my heart checked several times over my life, I have tachycardia, dysautonomia and POTS and they think it is connected to my CIDP. This photo is from when they were diagnosing my CIDP but had to also check my heart.

There is no real before and after to my story, it simply is. One day when I was 17 I woke up with a swollen knee and nothing was ever the same again. My journey of illness has been more of an evolution than a revolution, it happened slowly and not all at once. Over the years I lived undiagnosed I would have periods where my symptoms would go into remission states, and I was able to a lot more then than I can now. It was during these years that I learned how to listen to my body, work with her and take care of her. I was on my own in so many ways that I was forced to step up and take my wellness and life into my own hands. I am so blessed to have found the doctors that I did, and have chosen to never play the “what if” game or think about what I have lost. This is my life, and it has changed in so many ways, so many times that change and inconsistency are my normal. Yes I have residual problems and symptoms, and I probably always will, but I’m also alive. Being alive wins! Being sick is not the worst thing to ever happen to me, in fact it has made me a much better person. This is who I am, this is my body. I have seen the awfulness of GBS as both my father and cousin had it and made full recoveries. I live everyday with the unique challenges of CIDP. I do not see this as a tragic situation though, it is simply different. I am okay with different.

This was my first vacation outside of Colorado after being diagnosed. I have always been a huge traveler, so has Lee and we waited 4 years before I was stable enough to fly somewhere. We went to New Orleans and it was magical.

This is on our most recent vacation to California. I had spent the night before vomiting from pain, but I was in California and I wasn't going to let it ruin my fun. We had to totally change plans that day, but embraced the plot twist and spent the day watching seals... amazing!!! This was my I am a warrior and can rally photo lol

Yes I still have residual problems. One of the most difficult is crippling fatigue. I am know to fall asleep on the floor, or in other strange places.

This is me and my partner Lee now. In this photo we were at a farmer's market and I got a dizzy spell so we had to sit down. We have come so far together and have a really happy and full life even with all the modifications we have to make. I love this photo because even with how sick I was that day, we had such a good time.

This is one of my most recent infusion days. I get my IVIG every 3 weeks at home now. It has become so routine. This photo in in my bedroom hanging with my cat with my IV in my arm. I think it shows how we have accepted this reality as our normal.

• I am located in Denver, Colorado
• I was diagnosed in March of 2014 when I was 27. My CIDP started showing up around age 20 or 21 and I first became ill at age 17. I will be 32 in August
• I have a lot of residuals yes. I don’t live in even close to the same body any more.
• You can email me at ASargent108@gmail.com find me on IG @ashleythesarge or @the_art_of_chronically or my YouTube channel art of chronically or my website artofchronically.com (this is not live yet but will be very soon)
• I am pretty sure I have a variant. I have been told that I do not have a “textbook case” of CIDP and that all of my other conditions make my CIDP more complicated. Also the fact the two family members have had GBS, and autoimmune is very common on both side of my family is something that people like to note in my account.
• My treatments used are IVIG and when needed oral or IV steroids. I have been hospitalized but I don’t remember the treatments they gave me. I also have worked with a physical therapist, and use diet, exercise and lifestyle modifications as one of the best ways to treat my symptoms.
o I also use medical marijuana, which helps a huge amount, and essential oils, which also help a huge amount.

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

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

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.

The Faces of Guillain Barré & CIDP 2018: Day 31- Janez #99

Part I.
Abbreviations used in the text: GBS - Guillain-Barré Syndrome; Neuro – Univerzitetni klinični center, Nevrološka klinika Ljubljana  (University Medical Centre, Ljubljana Clinic of Neurology); Soča – Univerzitetni rehabilitacijski inštitut Republike Slovenije – Soča, Ljubljana (University Rehabilitation Institute of the Republic of Slovenia – Soča, Ljubljana); EMG – Electromyography.

THE FIRST ENCOUNTER WITH GBS: It starts suddenly, like a bolt from the blue. You go to bed healthy, and wake up paralysed. Simple description of the disease would be as follows: you contract a mild bacterial or viral infection, and your body starts producing antibodies which attack not only bacteria or viruses, but also nerve fibre sheaths. The sheaths deteriorate until the treatment stops the disease. In severe cases, not only the sheaths are affected, but also nerve fibres, and it happened in Jani's case as well. During the first EMG test his leg and arm muscles showed practically no response.

Before the illness I was a mountaineer - alpinist. In the background of the picture is Triglav, the highest mountain in Slovenia. The goal is to once again stand at the top.

TREATMENT AT THE NEUROLOGICAL DIVISION: The disease comes quickly, but it takes time to deal with its consequences. And it is especially true for neurological diseases, including GBS.
The treatment started immediately upon Jani’s arrival to hospital. He was administered infusions of immunoglobulins (blood donors’ healthy antibodies). As the improvement was too slow, treatment with plasmapheresis was introduced after two weeks (patient’s blood is withdrawn, plasma removed from it, and then blood cells are returned into patient’s bloodstream). Both procedures are practically painless. The first procedure required insertion of a catheter into a vain on his arm through which medications were administered, and the second insertion of two catheters into veins of his groin to allow blood purification. Catheters were removed from his groin a couple of days after the end of the therapy. During his entire stay at the Neuro he had catheters inserted in his veins. Every few days, when the flow through catheters became obstructed, they replaced them, using veins on both arms and legs. In the beginning it was among the most painful experiences, along with almost daily blood draws. Moving was, as a rule, also very painful, e.g. at washing in the morning.

AUTOSUGGESTION, VISUALISATION, BREATHING EXERCISES: Jani was told that visualisation and autosuggestion exercises have a positive impact on recovery, and that these techniques are often used at recovery of top athletes, so he performed these also autosuggestion and visualisation exercises several times a day. They also helped him pass the time, during the day, but also during the long nights. It is best if a patient practices mind games with a topic close to him – it can be a hobby, or anything at all.

REHABILITATION AT SOČA: The first two days after admittance to Soča are dedicated to adaptation to the new environment. The doctor examines the patient, and prepares a rehabilitation programme. The second and the third day a work therapist and a physical therapist test mobility, strength, and functional capacities of the patient. The third, or the fourth day therapy sessions start. At Soča the peculiarity of the new environment is immediately noticeable: everything is oriented towards improvement of functional capacity, and activity. A bed stops being the centre of all the activity – the focus is on the wheelchair, all kinds of exercises, and daily activities. The entire staff constantly encourages patients to move, and to be as independent as possible.

THERAPIES :  Physical therapy, Balance board – video games, Electro-stimulations, Hydrotherapy , Work therapy, Magnetic therapy, Psychological and social therapy, Group therapy, Therapies with doctors, therapists, nurses, technicians and other staff, Autotherapy.

REHABILITATION AT HOME: Release from a hospital system, and return home has a very positive impact on a patient. Yet the downside is that the patient is suddenly has to rely almost entirely on himself, and his family.

When realised from Soča, Jani was able to walk independently with a walker for a couple of hundred metres, so in the first month after his release from Soča he spent mostly in his wheel chair. Three months into his return home he still relied on help from his family for almost all daily tasks: undressing, dressing, preparation of food, hygiene, transport to physical therapy into the local health centre, etc.

THE SECOND PART OF REHABILITATION AT SOČA: In February 2016 he returned to Soča for three weeks and continued his rehabilitation. In his opinion the rehabilitation went by too quickly, and should last at least five times longer, or as long as necessary to enable the patient for normal life and work; Jani was positive that after the rehabilitation and another month or so of staying at home he would return to work. He had the impression that he made more progress during a week at Soča than during three weeks spent at home, and he attributed it to the professional staff, daily exercising in a pool which was unavailable at home, and special exercise equipment at Soča.

FROM MARCH TO OCTOBER 2016: After being definitely released from Soča Jani continued therapies at home. Gradually he became able to use more and more tools he had prepared. He still exercises two to four hours a day (different therapies). He dedicated a part of the morning and a part of the afternoon to therapies, mostly it depends on the weather, and when the help with exercises is available. When the daily tasks he is able to perform by himself are taken into consideration as well, the time dedicated to exercising is even longer.

He dedicated some work therapy time to amusing surfing the Net, e.g. looking for suitable fitness tools and weights. Usually he ordered a piece through internet, to be delivered to his home address, and usually he wasn't able to use the bought tool for at least a month. He bought a small 10-kg dumbbell (several disks, total weight 10 kg), but not even after twelve months he was able to use it. After 15 months he was able to perform some exercises using only the handle (approx. 2 kg) ...


Part II.
I had a harder form  GBS. I'm still recovering...
My experience (Month: Activities). Start: March 2015, age - 52 years old, 2 months hospital, 4.5 months rehabilitation center.
April: Treatment. Immobility of arms and legs. Capable only of moving his right foot for 20 cm, turning and raising head, breathing, swallowing food, controlling urine and excrement. Totally dependent on help (food, dressing, hygiene..). Lying in bed.
May: Exercising with absolute help from a therapist. Movement of arms and legs in the range of a couple of centimetres (movement of feet, slight movement of arms towards body).

June: Exercising with therapists’ help, with minimal cooperation from the patient (3% arms, 10% legs). Tools: hand wheel 1st gear, stationary bike 3rd gear, pulley intermittently, suspension 25 cm of movement. Movement of arms and legs for 10 cm. Slight leaning on legs when changing position with the aid of a board, assisted by two persons. Stretching bent legs.

July: Exercising with therapists’ help, with own strength 5% in arms, 15 % legs. Tools: hand wheel 2nd gear, stationary bike 5th gear, pulley intermittently, suspension 40 cm of movement. Stood in the hydraulic standing frame for 10 min. Slightly wider movements of arms and legs, more than 10 cm. Raising feet 10 cm from the ground, in all directions. Changing positions with the aid of a board, assisted by one person, travelled home for the first time, carried inside in his wheelchair. Moving in wheelchair using legs, 50 m backwards, 10 m forwards, using arms 5 m. Made some steps aided by the physical therapist, and a walker.

August: Exercising with therapists’ help, with his own strength 8% arms, 25% legs. Tools: hand wheel 3rd gear, stationary bike 9th gear, pulley 2 kg, using both arms, suspension 60 cm of movement, exercises in Hubbard’s tank. When leaning elbow on a table he was able to scratch his nose, hold a straw, put food in his mouth. Stepped down from a higher therapy table, stood in a walker. Changed positions by himself. Pushed wheelchair using legs, 100 m backwards, 25 m forwards, using arms 20 m. Walked aided by the physical therapist, and a walker.

September: Exercising with therapists’ help, with his own strength 10% arms, 30 % legs. Tools: hand wheel 4th gear, stationary bike 13th gear, pulley 3 kg, using both arms, walked 100 m with crutches (walker). Walked in a pool, swam backstroke 100 m. Practiced climbing steps in a pool. Clenched fist, 5% of the movement. Ate and drank slowly by himself. Washed his hands. Read a book. Wiped his nose without leaning elbow. Got up from the wheelchair, changed positions while standing. Turned by himself on his side in bed.
October 2015: Exercised independently, with his own strength 12% arms, 30% legs. Tools: hand wheel 4th gear, stationary bike 16th gear, pulley 4 kg, using both arms, walked while pushing a walker with a saddle (with frequent rests). Swam backstroke 200 m, forward 30 m. Walked up and down 8 steps. Ate all meals by himself and drank (except preparing the meal and cutting to pieces), washed his teeth. Used the toilet. By the end of the month start using computer keyboard with accessories.
March 2016: Able to unzip a light zipper and buttons. Took off a baggy sweater (over head) or coat, took off his socks, dressed and undressed sweatsuit. Took off shoes with laces. Put on shoes with Velcro. Drank using one hand. Strength in arms 15%, in legs 40%. Clenching fist - 10-20% of the movement. Exercised strength with 0.5 kg weight. Longer distances with a walker. Trained driving car on a distance of few kilometres. Started typing without accessories.
August 2016: Walked kilometre or more with a walker, over hundred metres using hiking poles. Exercised on a combined fitness tool, starting weight. Strength in arms 18%, in legs 45%. Clenching fist - 30% of the movement. Exercised for strength using 2 kg. drove a car for 10 km.

November 2016:  Walked a kilometre with hiking poles. Short walk on unlevel terrain. Partial movement of the hand upwards in wrist. Strenght in arms 20%, in legs 50%. Exercised for strength using 3 kg weight, exercised on a combined fitness tool, second gear. Clenching fist - 40% of the movement. Drove a car for more than 10 km.

From the books:  Janez Mate, MY ENCOUNTER WITH THE GUILLAIN-BARRÉ SYNDROME and THE FACES of Guillain-Barré SYNDROME, Knjižnica Miklova hiša, Ribnica 2017





More information yuo can see: http://www.miklovahisa.si/

MY ENCOUNTER WITH GUILLAIN-BARRÉ SYNDROME
Look inside: https://issuu.com/knjiznica.miklovahisa/docs/my_encounter_with_the_gb_syndrome

FACES of Guillain-Barré SYNDROME
Look inside: https://issuu.com/knjiznica.miklovahisa/docs/gbs_obrazi_eng.

The Faces of Guillain Barré & CIDP 2018: Day 31- Liz #98

My name is Liz Shank; I am 24 and live in San Diego, California. Summer of 2017 felt like it was going very well, I had been constantly busy between my work and social life. The only hiccup was that I felt like I was getting sick more often than usual. I took no sick days and wasn't slowing down for a second. 

Exactly a week before GBS diagnosis : Taken June 24, 2017

At the end of February 2017, I had received my first flu shot and felt sick within a couple days of getting it. The months went by and as I got to the last part of June I noticed a couple strange things. While out with friends two weeks before I entered the hospital, I felt as if I had a hair stuck in my throat and had them checking with flashlights for this "phantom hair" and my drinks tasted strange to me even though I had them countless times before. 

Throughout the last week of June I went about my regular schedule and woke up Friday, June 30, 2017, to get ready for work. While washing my hands, I realized that the water hitting the top of them felt dull. My feet had been feeling a little numb but I played it off as an effect from wearing heels. Throughout the day, I would check to see if my hands still felt strange under water…they did. That evening, I went out with friends and the next morning slept in and woke up feeling strange, I brushed off those strange feelings until I tried driving that evening and my left arm suddenly couldn’t lift up all the the way to turn my steering wheel.  

I searched my symptoms on the web and remember seeing Guillain-Barre Syndrome pop up as a possibility - I scrolled past thinking "well that can't be it." Can you believe that even after that I had an internal debate of whether it was “serious” enough to wait for hours in an emergency room? Luckily for my impatient twenty-three year old self, there were only a couple people in the waiting room that evening.

That night I heard about the option of Guillain-Barre Syndrome again as the doctor explained the different possibilities for my symptoms. I had a plethora of tests including a spinal tap that was inconclusive and three MRIs to rule out other issues, I was hospitalized and diagnosed with Guillain-Barre Syndrome (GBS) by morning. GBS is an autoimmune disorder in which the immune system attacks the nervous system damaging the nerve covering which results in tingling, numbness, and weakness beginning in your extremities that can quickly ascend throughout your body leaving it in paralysis. It is defined as rare, with only one to two cases per 100,000 people each year. The cause is unknown; however, approximately 50% of cases occur shortly after a viral or bacterial infection (such as the flu). I had been sick with a cough for quite awhile prior to the onset of GBS so I fit into that statistic; later on they confirmed I had mononucleosis in my system. GBS travels upward from the fingers and toes towards the torso and facial muscles and can become fatal if it reaches the diaphragm, weakening the muscle and causing breathing to become labored.

In my case, within a few days I found myself in ICU almost completely paralyzed and on a ventilator and nasogastric feeding tube. The days leading up to being intubated, I did not know how to feel as I lost the strength from my legs and lost the ability to get up and use the restroom. They had tried Intravenous Immunoglobulin but I was only getting worse as the treatments were given. I found that texting became a strain and my voice started to become a whisper. The weakness had spread to my diaphragm, throat muscles, and facial muscles which had begun to take away my ability to breathe and eat. In fear of intubation, I tried to eat and drink but couldn't swallow and found myself choking on water.

Receiving Plasmapheresis in ICU 

By July 5, 2017, I had a planned intubation. In preparation for the intubation, I had a nasogastric feeding tube and urinary catheter inserted. I was wheeled up to ICU, and my nurse held my hand as they prepared to put me to sleep for the procedure. Waking up from the procedure, I was in a daze and a nurse was repeating that I had a tube in my throat and  it was there to help me. While she spoke, tears streamed down my cheeks as I kept thinking, " I know that…why are my hands tied down…I CAN'T EVEN MOVE THEM."

Once in ICU, I had five rounds of Plasmapheresis (which removes plasma from the blood) over ten days to help speed recovery. I spent around two months in ICU and the minutes spent there felt like hours. At one point, I prayed asking God, "If you know I'm going to never recover and won't be able to move or talk again, please just take me now." I could only communicate with my loved ones and doctors by moving my head to spell out words on an alphabet board they would point to.  I felt like my body was extremely hot and constantly had a fan directed at me even though the air-conditioning was so cold my family members wore heavy jackets to stay in my room. I tried to not make a big deal that I would get blurry or double vision because I heard my doctor say that if I were to have those symptoms it meant it could be a more severe strain of GBS.

The nights were the worst for me, that's when the area would get dark and quiet and my family members would sleep. I would panic about not being able to breathe, about being too hot, and just about the possibility of something going wrong and me not being able to scream for help. I was given an easy-touch buzzer to call the nurses because my fingers could move a little to hit it but during the night my arm would fall off the pillow it was on and I couldn't move it up to hit the buzzer. One day I woke up in the middle in the night and found that I had lost my ability to move my fingers. The next morning, the doctors gathered and were baffled as to why I would gain movement then lose it. This made me have a break down about whether I would continue to have movement gains and then lose them (I later found that this was just muscle fatigue).

First day outside of ICU

Fortunately, more than 95% of patients recover with little to no residual effects. Because of the long-term nature of my stay, I had a tracheotomy and gastrostomy. I had the enormous task of then trying to learn how to breathe off the ventilator so I could use a Passy-Muir valve to talk, drink, and eventually eat. I got pneumonia a few times and even had to have liquid removed from between my lung and the outer wall. When I moved out of ICU to a lesser intense unit, I felt like my improvements were really showing. Because of some amazing speech and respiratory therapists I was getting better at speaking and was passing the tests to be able to eat a portion of my meals. I was finally getting my limbs to move with the help of my physical and occupational therapists. Sleeping became something I didn't panic about and I finally saw the light at the end of the tunnel. After almost three months in the hospital, I was transferred to a rehabilitation center where I spent about a month. 

100th Day Hospitalized

After 111 days of hospitalization, on October 19, 2017, I was able to walk out of rehab (a very short walk with my walker) and I finally found my way back home. It's been six months since I left the hospital and I have gone from looking at a parking lot and thinking, "I can't imagine walking across this even with my walker" to hiking a 6-mile muddy trail and only falling once. I have gone from needing three people to help transfer me from a wheelchair to a toilet to being able to fully care for myself. I have gone from not being able to open water bottles to opening items for others. I still can't run (not that I enjoyed doing that before…) and I still get tired easily, I am not able to get low to the ground and get back up again without an item to push myself up, and my feet are tingly and partially numb. But all in all, I feel grateful that I have made such great improvements in such a short time.

Walking out of Rehab : Taken October 19,2017

During my varying stages of this disease, I experienced an outpouring of support financially, emotionally, and spiritually from my healthcare providers and my community. To all of those who laid my foundation of support, I thank you. Thank you to those who held my hands even when I couldn’t squeeze back, who moved my limbs so they wouldn’t get stiff, who painted my nails and brushed my hair, who smiled at me when I couldn’t smile back, who told me stories when I couldn’t talk, who cried with me, who laughed with me, who wrote me well wishes, who brought me gifts to cheer me up, who kept me in their thoughts and prayers, who donated to a surprise GoFundMe for my medical costs, who orchestrated and participated in a surprise fundraiser, and who showed me in countless ways that I am loved. I never thought that I would feel so embraced by so many people. While in the hospital, I determined that I would spread awareness about GBS as a way to thank those who are supporting me in this journey towards full mobility and health.

 This is a "small" snippet of my GBS adventures and one day I want to share all of my small details because when I was at my worst I wanted to know that what I was feeling was "normal." I met a liaison from the GBS-CIDP Foundation and she made the disease seem like it could be conquered. I hope to do the same for someone else someday. My GBS journey to recovery is not yet over but the best is yet to come. 

Fellow GBS Survivor, Semret Russo

As Nelson Mandela stated, “It always seems impossible until it’s done.”

Hiking 6-Mile trail in Hawaii : Taken April 22,2018

Follow my journey!

Instagram: @liznicoleshank

Facebook: facebook.com/elizabeth.shank.7 ;