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The Faces of Guillain Barré & CIDP 2018: Day 22- Caroline #88

Tuesday, May 22, 2018 0 Comments



My Guillain Barre Story – Caroline Wilson Zürich, Switzerland

In November 2011 I gave birth to a beautiful baby boy. It was a C-section delivery but as a fit 31 year old woman I recovered quickly and had a very active and fun maternity leave. I was also training for a half marathon the following September.

Before GBS


On 1st September 2012 I went for my final long training run before the race. I noticed some slight tingling in my feet afterwards but thought nothing of it. The next day I felt like I was coming down with a cold and had a really sore back and neck. One day later I was having trouble walking straight and could no longer climb the stairs. I went to my doctor who referred me to a neurologist. I was extremely lucky to see the experienced neurologist that I did. He had seen several cases of GBS before and could diagnose me immediately. The most important thing he said to me was this “This could get worse, it could get much worse so that you can’t even breathe anymore, but always remember it will get better again”.

The next day I couldn’t get out of bed anymore so my husband had no choice but to take me to the hospital. I will always remember breastfeeding my 9 month old baby one more time before we left. At the hospital they were very nice but completely clueless about how to treat a patient with GBS. The main mistake they made was that they didn’t realise that the weakness and paralysis was progressive, so they would wheel me up to the lunch table and not understand that I could no longer lift my fork. Or they would help me up to go to the bathroom and not realise that I could no longer stand on my own and I would fall to the floor. Even the senior neurologist dropped me on the floor when he was helping me back into the wheelchair after my EMG exam.

The biggest mistake they made was that they didn't monitor my breathing correctly. And I didn’t let them know that it was getting harder and harder to cough and keep my throat clear. After 2 weeks in the hospital, they decided to transfer me to a rehab facility to start my recovery. Unfortunately, as soon as I got there, I had a respiratory crisis and had to be sent straight back to the hospital, this time to the ICU. My breathing got so bad that they had to intubate me and then perform a tracheostomy. When I came round after 2 days I could no longer move my legs at all and was basically paralysed from the mouth down.

I remained this way for 2 weeks, only being able to communicate with the nurses and my family by blinking as they spelled out words on a board. I wasn’t able to communicate the intense pain I felt the entire time. I was given IV morphine every hour and I spent most of the second half of each hour counting down the minutes until my next dose. I also had no way of calling for help, as I couldn’t push the call button. One night my arm fell off the bed and I lay there for an hour screaming in silence until the nurse who came to check on me noticed.  During this time those words from neurologist came back to me over and over again and always gave me strength.

I was treated with 2 courses of IVIG and gradually as the days past I started to regain some movement. First I could move my hands and lift my arms and then start to smile and move my mouth. I was taken off the respirator and able to breathe on my own again and talk again. Then I was able to sit up with support for short periods of time. With every new movement came more intense pain. As the nerves started to regenerate I felt like my whole body was on fire, and my muscles had seized up from disuse. My husband visited me twice a day every day that I was in the hospital and my parents came every day with my son. It was this regular routine that kept me going and stopped me from going mad.

A visit with my son and husband


Finally I was transferred to a rehab facility where I received regular physiotherapy as well as acupuncture treatment. I continued to improve and after 5 weeks I was able to get around in the wheelchair on my own and transfer in and out of bed. During this time my son celebrated his 1st birthday. We had a small party in my room at the rehab centre with a few friends. It was the first time people had seen me since my illness and I could see the shock on their faces at the state I was in. I was then transferred to a second rehab facility where I stayed for another 4 weeks. I made steady progress and by Christmas I was allowed home for a few days. Being home really brought back to me what I was missing out on and shortly after the New Year began, I asked to continue my treatment as an outpatient so I could be with my family.



After a total of 4 months away, I was finally home and I thought my ordeal was over. Unfortunately for me the worst part was still to come. All along we had all been working towards the point where I was well enough to come home and we all assumed then life would get back to normal. What we didn’t realise is that during the time I was away and unable to play or communicate properly with my son, he had forgotten who I was. He knew I was mummy of course, but he no longer remembered that I was the person who had been with him for every day of his life for the first 9 months. I wasn’t the person he went to when he was upset or wanted a cuddle. I was just some woman who lived in the hospital, who he went to visit. And now I was in his home and he didn’t want anything to do with me. For weeks on end he would scream every time my husband left the room. He refused to sit with me or cuddle me and since I anyway couldn’t lift him up or play on the floor with him, I couldn’t improve matters. Of course they did improve eventually. I regained my strength and he started to get used to me and eventually he could no longer remember a time when I wasn’t there.

Physically I made an almost full recovery in a little over a year. Although I still had problems with fatigue for a while after that. Now coming up to 6 years post GBS I can run and jump and 2 years ago I had a second child with a complication free pregnancy. I still have numb patches on my feet and they are very sensitive to cold and rough surfaces. My EMG results are still too poor to measure, but I finally ran a half marathon last September and will run one again this year.



I feel very blessed. Not to have had GBS, but to have the knowledge and awareness that comes from having been in that position. And for the wonderful staff that looked after me. But most of all for my wonderful friends and family who supported me every step of the way.

The Faces of Guillain Barré & CIDP 2018: Day 21- Gail #87

Monday, May 21, 2018 0 Comments


  My GBS Story  


      I greeted the new year on January 1st 2010 with joy and optimism, We had enjoyed a wonderful Christmas and I was a happy little 58 year old Grandma with a beautiful new Grandson.  We were looking forward to what we thought would be a wonderful new year.

Before GBS


     I had a busy day planned for January 15th. There were several things on my list. I stopped for a quick appointment not far from home, then I visited with my sister. It seemed like a normal day as I drove around town with the baby strapped to his seat in the back seat of the car.  I noticed my hands and feet felt numb. But I shook it off and boogied on about my business, little suspecting the living nightmare that would begin that night.

    I woke up to go to the bathroom and fell 3 times before I could made it back to my bed. We called my son and he and my husband took me to the hospital as I was rapidly losing all control of my body. Within hours about all I could only turn my head from side to side.
      My Brother had GBS about 10 years before this and it was the first thing we thought of when I got sick. But they assured us that this was almost impossible because the disease was very rare and does not run in families.  I was in the hospital several weeks and received many tests before they grudgingly admitted this was possible.

      I received IVIG treatments and after I was transferred to Herman Hospital in Houston Texas I Underwent two rounds of Plasmapheresis. By this time I was on a feeding tube, a catheter and had a tracheotomy. I remember very little about my time in Houston as I was highly medicated or in a coma most of the time.

In my wheelchair


     After a few weeks in Houston they felt there was nothing left that they could do for me and they sent me back to a hospital near my home in Southwest Louisiana . My Doctor told us later that he didn’t give me 24 hours to live when they took me out of the ambulance.
      I was still in a coma when they brought me back to a hospital in my area. I remember my sister fussing at me, telling me to stop sleeping my life away when at last I woke up.
      I could not speak, eat, breathe, or move in any way to speak of, except to move my head from side to side. Every night the nurse would make a little “nest” of pillows around me and I would be there exactly as they left me the next morning. I could not shift myself around in the bed.

       I remember once there was a mosquito in the room when I was alone. He buzzed around and lit on my ear. I could not move or call out. I shook my head and he flew away, but he came back. This was repeated till I got tired of the process and just lay there till he drank his fill.

In the hospital 

       Around the last part of May they moved me to a rehabilitation facility in a large area Hospital, by then the feeding tube had been removed and the breathing machine disconnected but I still had a tube in my neck. I was being spoon fed by my family and the staff and I had some therapy. I still could not move much or roll my own wheel chair.
        I stayed nine weeks in the rehabilitation facility without much progress except the trach tube and catheter finally came out.
        I came home about July 16th or 17th and almost immediately I found I could roll my own wheel chair.  Home health Therapists came three times every week and we hired a sitter to stay with me while my husband went to work. It was the Home Heath ladies got me standing up and walking on my walker and going to the bathroom by myself.  After a while I could no longer qualify for Home health and my sitter, and later my husband when he retired took me to receive physical and occupational therapy. I went from a wheelchair, to a walker, to crutches, to a cane. I still walk funny sometimes, and I fall down if I am not careful. My hands and feet remain numb, I drop things often, have poor reflexes and still do not drive. 

But I can cook, and clean my house (sort of). I can shop (though I need a nap afterwards) and I can take care of my own personal needs. I was a very fast typist before I got sick, of course that is gone now. I peck out words these days with two fingers. My fine movement is gone, I can no longer work a necklace clasp or put on most of my earrings. Shoes are a problem, most of them hurt my feet and I go barefoot most of the time. I get sick if I get to hot, and tire very quickly, but I am so grateful for what I have. I am not sure what my trigger was but I did get a flu shot in 2009 before I got GBS.

       My Brother got Miller-fisher GBS about the year 2000, I got GBS in 2010, my niece got GBS around the first of 2016 I think. We also have a first cousin from Arizona who had GBS.
    My daughter, became pregnant while I was undergoing therapy and I told her I wanted to be able to stand up to witness the birth of her baby. And I did, they pushed me to her room in my wheelchair but I was able to stand to greet my new Granddaughter.

My granddaughter and I


      There was much prayer that went out for me while I was sick and I believe the Lord played a big part in my recovery.     

The Faces of Guillain Barré & CIDP 2018: Day 20- Jenny #86




This past year has been crazy for my family and I. I became pregnant, had a baby, bought a house, packed and moved out of state, and endured Guillain Barre. After having a wonderful natural birth experience, I started having a lot of postpartum issues. I have a lot of feelings of frustration when looking back at my time with Guillain Barre. I also realize that this experience, along with becoming a mom, has made me stronger than I could ever imagine. Most women deal with some sort of postpartum issue. My postpartum issue just happened to be extremely rare and very serious. My guillain barre is milder than most of the stories you hear about. However, I do not think mild is an appropriate term for something that takes over every part of your body. The reason I am writing this is, is mainly therapy for myself. I really am not wanting pity, or to scare anyone (it's extremely rare, I'm just the special one who gets to deal with it haha) I just want to share a positive story of a strong mama bear who didn’t give up.

About a week after giving birth to my baby my symptoms started appearing, this was at the end of August 2017 ( I am listing my symptoms at bottom of my story). I had progressive symptoms until 5 weeks postpartum and then they started to plateau. People I talked to about my symptoms, they made it seem as though they were just postpartum or a hormonal issue and that these issues would go away. I went to the doctors a few times, and all they did was bloodwork and referred me to a rheumatologist (which had a 3 month wait until appointment). My bloodwork was excellent except for a positive ANA. Vitamin D, Vitamin b12, Sed Rate, C-Reactive protein, metabolic panel, CBC, and rheumatoid factor were all great or normal numbers.The only abnormal thing in my bloodwork was a positive ANA which is why they suggested rheumatologist.

First trip to get bloowork


I ended up developing mastitis from breastfeeding and taking a round of antibiotics, which sent my body back into a steady decline. After the infection and how fast I was declining I kept researching my symptoms. Guillain Barre was the one thing that seemed to fit all of my symptoms and type of onset. A strange symptom that sets Guillain Barre apart from other neuromuscular diseases is absence or diminished reflexes. Learning about the lack of reflexes being a symptom seemed to be an easy thing to check at home, since none of the doctors had done this at my previous appointments. My husband checked my patellar (knee) reflex multiple times. The result was no movement, or no reflex. We tried multiple times, and even tested his reflex. He had a strong reflex and I never got anything. It was in that moment that I decided I needed to press the doctors for further answers as I was still declining and I had something to make the doctors look harder than they were. Sure enough, this appointment they were more concerned. They did multiple neurological tests testing balance, strength, and reflexes. With these results they referred me urgently to a neurologist. To be honest, it still upsets me they did none of this at my first visit a month before this, because it could have been handled then.

 The neurologist I was referred to was pretty cold and reserved in bedside manner. He did neurological tests, testing balance, strength, how my sensations were, how I walked, and reviewed my symptoms. He suggested I may have Myasthenia Gravis or Guillain Barre, I was to come back in 2 days for an  EMG. I had the EMG which was very uncomfortable. Imagine being stuck with a cattle prod dozens of times all over your arms and legs… then increasing the voltage. Neurologist read the results as CIDP, the chronic form of Guillain Barre… though he did not take into account my plateau period and the infection and round of antibiotics I had that preceded my decline. He ordered a pre authorization for IVIG and sent me on my way. I honestly think I  should have been admitted to hospital for monitoring and for immediate treatment, but that did not happen ( I had dysautonomia, as to why I think I needed to be monitored).
 never received treatment, no steroids, no liquid gold( ivig), and no pain medication. The only thing I took was ibuprofen, which does absolutely nothing for nerve related pain. I did not receive treatment for a few reasons: 1. Was not diagnosed until almost 3 months postpartum 2. Doctors didn’t admit me to hospital 3. Preauthorization for IVIG takes a long time (at least for me) and I was in the middle of doing continuation of coverage (COBRA insurance).

where you would find me most of the time, on the couch.


I would have done almost anything for any sort of treatment. Seriously, quite a few times I cried on my husband because no one would help me. Insurance denied me treatment because I was in the middle of continuing coverage (side note: my COBRA experience has been horrible). This was December and we were moving to Texas. We were moving and we were changing insurance to my husbands work in January, so I got an appointment in January for a Texas Neurologist and just hoped I didn't keep getting worse, because I literally had nothing to help me. November and most of December were absolutely terrible. My symptoms were at the worst and I just had to keep living, because what else are you supposed to do? A few days after Christmas I started getting better. Just out of nowhere, improvement. I call it my Christmas Miracle. No treatment or anything just spontaneous recovery.

I saw my new neurologist in January, and she was absolutely fascinated by my recovery. At this appointment all of my reflexes were back except for ankles and my wrists were still a little reduced (left side a little worse than right side) My balance was so much better. Physically I was probably 90% better than I had been. My case is unusual in the fact I never received treatment and I got better. CIDP patients do not get better without treatment. There are relapsing remitting forms of CIDP, but it is relapsing and remitting due to treatment or time lapse between treatment. My neurologist suggested it was a sub-acute form of GBS, meaning in between Guillain Barre and CIDP. She wanted to rule out other conditions such as Multiple Sclerosis, although she thought this was an extremely small chance due to how and where symptoms were presenting. So she ordered an MRI of brain and spine as well as another EMG. MRI came back clean. A couple weeks later I had the second EMG. This time around the EMG was even more uncomfortable, which should be a good sign (more sensation and feeling in legs). However, my EMG results did not show much change compared to my EMG in November.

From the EMG results you can diagnose me as CIDP she explained but because of the way I am healing and recovering she thinks it is more of a subtype or subacute form. Basically my nerves were and still are super damaged in my lower legs and ankles. She gave me options as if I wanted to do treatment of IVIG, steroids or not do anything. She also said doing a lumbar puncture (spinal tap) would be helpful to see if proteins are elevated. I chose not to do anything. Stress and lack of sleep seem to be the things that bring out my residual symptoms the most. I feel a lumbar puncture would really stress my body. The fact is I know my body is healing. I know my body is not in an active state of an autoimmune attack. I do not need an expensive, painful, stressful test to tell me that. If my body gets worse I will absolutely get a spinal tap, if they need it. I also refused to get IVIG or steroids at this point. IVIG works to stop the bodies immune system from attacking its own tissues. But my immune system is not attacking its own tissues, I am in a state of remission. There is no way to tell if IVIG would help or not at this point, according to my neurologist. I am 90-95% better and each week I notice improvements. IVIG is extremely expensive and time consuming, it is nicknamed liquid gold in the GBS/ CIDP community. I’m not refusing treatment because I’m some wacko who doesn’t like medicine… I mean I do question what I put in my body but that is not the reason for not getting IVIG. I honestly feel 95% better and my body is healing itself without treatment, I do not feel it would make a significant difference at this moment.

It’s currently late April 2018 as I write this post. I am 95% + better I would say. I am continuing to notice improvements and feeling better. My neurologist is moving out of state so I am getting set up with a neurologist at UT Southwestern, which is a Center of Excellence for GBS/ CIDP. Although this experience was AWFUL, I do think it changed me for the better. I realize I am stronger than I knew I was. I feel like I have second chance at life. I am trying to catch up on the experiences and time lost with my 7 month old daughter, things I couldn’t do with her before we are now doing all the time. My favorite thing to come of this is that I now know  what it is like to have a spouse who loves you unconditionally through “sickness and health”. And that love I am lucky to share is something better than a Nicholas Sparks book. And now I will conclude with my cheesy but true words of advice. Love is what matters. Enjoy and respect your body, you never know what can happen. Attitude can make or break you. Try and stay positive even when it feels like a lost cause. Be your own advocate, because no one else will.

- me now 


Symptoms at onset:
Extreme back pain couldn’t even get comfortable in bed. Extreme muscle pain throughout body, felt like knots in muscles. The pain was from my feet all the way to my face. It was painful if touched but not if resting though. A hug hurt, sitting on a hard chair hurt, sitting on a toilet hurt, smashing garlic hurt, yawning hurt…. You get the picture. My legs felt weighted in cement, doing anything involving my legs felt like a chore. I felt like I had just run a half marathon or marathon every day. My body became stiff and lost flexibility. I was not longer able to touch my toes, in fact I could barely reach past my knees. The lack of flexibility affected pretty much everywhere. In fact, I remember having to smoosh my sandwiches so they would be a little thinner because my jaw was so stiff. I had difficulty walking, I could not go far or fast. Stairs were very difficult. It was as if my brain wasn’t communicating to my feet what to do. I could not run and couldn’t jump. I had shortness of breath if I did pretty much any activity. I had trouble getting up from sitting. I would have to use my hands to push my body off a chair or couch. It hurt so bad to get on and off the floor. I was hardly able to have tummy time with my new baby. I could not stand on tiptoes and could not put pants on without sitting on bed or holding on to something. I also would have the feeling that my feet were burning or on fire at night or after shower. I started having tingling/ feeling like my big toes were asleep. This was just the beginning.

Symptoms at peak:
The one thing that went away was the extreme back pain, everything else got worse. I still had pain everywhere. In addition to my legs feeling heavy my whole body felt like it was weighed in cement… doing anything was hard. Feeding our dog was a hard task for me, because bending over to get her food bowl and fill it up then put it back on the ground was too painful and challenging. I still did most everyday things… it just was extremely painful and slow. The only thing I really gave up on doing was taking the trash outside or going down to the basement. Instead of just my toes being tingly/ numb, it was now my entire foot. Not only was my entire foot tingly/ numb my whole leg from my calve to my hip was extremely reduced sensation, couldn’t feel as much and it felt so strange. When I shaved my legs it felt as though I was peeling the skin off my body. Occasionally I would have numbness and lack of sensation in my abdomen, this would come and go, not for long periods but happening everyday or every other day. My fingers wrists would get tingly and numb, mostly affecting thumb and index finger on both hands. My handwriting started getting smaller and having issues with fine movements using my hands. If I became tired or body was strained (which didn’t take much) my arms/ hands would start to have a slight shake. I had shots of electricity flow through my arms and hands every so often, this was one of my least favorite symptoms. Swallowing large gulps of water became difficult, thankfully it was only if I was really drinking water too fast and did not affect my eating and drinking more than that. I had shortness of breath with pretty much any activity. I feel I had blood pressure fluctuations when getting up too quickly…. But I do not have any way to show this. If I went upstairs I hand to pull my body up with my arms, if there was no hand rail I would fall. In fact I fell twice going up/ down different stairs. My blood pressure and heart rate became significantly elevated compared to my normal: my normal bp 110/60 hr 55-60 : 11/13/17 bp 130/90 hr 90. Everything was hard to do, especially getting up and down from floor or chairs. I had lack of reflexes in legs and extremely reduced reflexes in arms. Walking was very hard and hills or long distances really didn’t happen. I had a wide based gait to compensate for balance. I failed the romberg tested, couldn’t stand on one foot, felt off balance when closing eyes, anything to do with balance I would fail. I still had feeling of feet burning probably more frequently than before. I still could not run or jump. I could not stand or walk on tiptoes… which was really annoying because I could not turn our light or fan on or off.

Symptoms currently:
Most of my symptoms are gone. I have pretty much normal sensations everywhere. My big toes are still a little reduced sensation but nothing like they were.  I still have a little muscle pain in wrists and calves but it is not anywhere near what it was. I occasionally feel electric shocks in my feet/ legs (nerves healing).  Hot and cold temperature effect my feet still, feet become red and tingly if too hot. If I am really tired or sick, I will feel slightly tingly in my fingers and toes (residual nerve damage).I still have no reflexes in ankles but knees and arms are normal. My flexibility is coming back, almost normal. My body does not feel weighted down. No numbness anywhere on body. I do not have difficulty swallowing. I do not have to use handrail when climbing stairs. I have no shortness of breath. I can get up and down from floor without using my hands and it is not painful. I can walk normally with no wide based gait. I can walk up hills and go long distances and even speed walk. I am able to run. I can jump. I can even do burpees. My balance is normal. I can be on the floor with my baby for tummy time. I can walk my dog without fear of falling over due to balance. Basically I now feel like myself.



Trigger/ Cause: TDAP or Birth of daughter
Location: Kansas City for most of GBS, just moved back to Plano, Texas
Age of Diagnosis: 27
Date Diagnosed: November 15th 2017, symptoms started end of August beginning of September.
Residuals: Occasional tingling in toes and fingers (only if extremely tired or sick), hot and cold effect my feet, no reflexes in ankles.
Instagram: jennymariecastaneda
Variant: none that I know of
Treatment: none

Symptoms: listed in document


The Faces of Guillain Barré & CIDP 2018: Day 19- Teresita #85

Saturday, May 19, 2018 0 Comments



Hello from Monterrey México, my name is Teresita Barrios i am 35 years old.

Before GBS 


I started feeling cramps on my right foot on final days of October 2016, after few days i feel the same cramps on my left foot, three more days passed and i started feeling the same cramps on my right hand, 2 days after the cramps passed to my left hand, and a day after i started my legs, feets, arms and hands really heavy and i felt like someone was stabbing me from inside, i felt like i was burning inside my lower parts on legs and arms, but honestly i thought that was part of my gastric bypass surgery that was realized on May 2016, but i went to see my surgeon and he made me take several tests and he told me that my health was really good but my problem was neurological because my left eye could not responded to a ligth, my hand was like claws, and by that time i was on wheelchair because my legs and arms were so clumsy, so he referred me to a Neurologist and he made me have a spinal tab, several blood test and both came clear, but he gave me a letter directed to my family doctor reconending that i needed  IVG treatment, so on December 2016 i was addmited and by the end of the treatment i barely could move my fingers foot. Then i went to see a therapist and then a raumatologist who in the same time recomended me my actual Neurologist who made me new EMG test and they came out really bad, so he asked me several questions of family health history, and then he asked me if after my bariatric surgery i got sick so i remembered that i got a really bad troath infection 3 months after my surgery. He told me that i had GBS due my troath infection, but my case was a mild but rare case because my symptoms escalated in months not hours or days as usual, so i satarted with my therapy and my medicine.

After GBS


After two months i started feeling again my feets, my hands started moving again, and finally after 8 months on wheelchair i started standing by myself and then i started going to the bathroom, then finally taking shower alone. Now after a year i am walking again with a cane because my feet look like they are made of jell-o. I am really blessed because my husband, my son, and all my husband family helped and still help me  during that painful process, honestly with my GBS i realized that i am stronger and on Saturday March 24th my Neurologist congratulated me because finally my right leg nerves started responding again. My muscles are perfectly fine dispite my low responding nerves, my strength on my knees, arms, hands and legs are really good. I am soo lucky because on my path through this horrible disease I have found some amazing people.

Thank you all for reading my GBS journey, i am praying for all who is suffering from GBS.

  

The Faces of Guillain Barré & CIDP 2018: Day 18- Josh- #84




My name is Josh, a 22-year-old from Nottingham, England. In November 2017, I was diagnosed with Guillain-Barre Syndrome.

One evening, I started to feel weak and fatigued all over my body after finishing work. At first, I assumed it was a cold/flu so left it for a few days. A few days later I felt a lot weaker, sickness and struggled to walk. My legs felt extremely heavy and had tingling sensations in my toes and fingers. It was almost like my legs were filled with concrete and I was carrying this extra weight with me. Soon after this I told my GP how I was feeling and the verdict was that I have a viral infection. I went home to rest but as the days went by, my symptoms worsened and developed. On the second visit, he referred me for some blood tests but it wasn’t until I was unable to walk at all when I was finally admitted to hospital. I had to be carried by my parents into the back of a car to get to A&E.

When I was first assessed at the hospital, I was told I had Glandular Fever and the struggle to walk was due to dehydration. At this stage I was given the option to go back home and rest but I knew my body just wasn’t right and requested to be observed overnight. Sure enough, once I was looked at further the next day, it turned out I did have Glandular Fever but the dehydration was actually GBS that was triggered by the fever itself.

It was 18th November that I got my diagnosis but to ensure it was accurate I went for a Lumbar Puncture Procedure. As someone who hates needles, this wasn’t easy. In fact, to make matters worse, the doctor performed three unsuccessful attempts before I was taken to theatre for a specialist to collect the fluid from my spine. Whilst we awaited these results and I recovered from a tiring and painful procedure I was put onto the treatment for GBS to be safe. I was told it was important to treat GBS early to stand a chance of a successful recovery. I was put onto Intravenous Immunoglobulin (IVIG). This is a treatment made from donated blood that contains healthy antibodies. These are given to help stop the harmful antibodies (those sent by the immune system) damaging the nerve cells further. I was informed such treatment usually takes 4-6 weeks to kick-in. In addition, I also undertook a nerve conduction test which monitors the signal strength of the nerves. This came back as ‘severely damaged’.

As the days in hospital went by my condition deteriorated. At its peak, I was unable to move my legs and arms. I wasn’t able to sit, stand or walk. I couldn’t chew, talk or do basic human things without help from family and nurses. My whole body ached and mentally it started to eat away at me. It was all very new to me and I knew very little of the syndrome. I was scared about just how much worse things could get. As a young active sports fan, I lost my dignity, privacy and independence. Numb and pain 24 hours, seven days a week, every day was a challenge.


Standing for the first time


Thankfully the only part of my body it didn’t affect was my chest which meant I avoided ventilation. As a result, once the Glandular Fever symptoms started to improve I was able to begin my road to recovery. Two weeks after being admitted to hospital I was transferred to the rehabilitation unit where I learnt how to do all the things I lost due to GBS. From sitting to eating and from talking to walking. I spent a total of four weeks at this unit before I was deemed fit enough to go home. This meant I recovered so quickly, I was only in hospital for little over one and half months in total. For an additional four weeks, I received physio therapy at home and was given daily exercises and plans to perform.

Between January and April 2018, I focused on getting my strength and balance back. Pushing myself each week, taking each day as it comes and setting myself personal goals. As I write this in April itself, I have just celebrated my 22nd birthday. I am at the stage where I can drive my car once more, back to work, eating normally, standing, walking and running. I have started to train in football again and all of this has gradually come back whilst setting those personal weekly goals.

Despite feeling such a long and difficult battle, I feel I have won. I have been told that I have made one of the fastest recoveries from GBS Nottingham has ever seen and I am proud to say that.


Progress


I realised during my recovery I could get so much from my experience other than negativity. I wanted to create awareness on GBS and offer support to those fighting it. I wouldn’t describe myself as an inspiration but by making such a quick recovery, I felt I had a story to tell that proves you don’t have to take years or even months to fight back. I started running a Facebook page soon after I came out of hospital. ‘GBS Fighters UK’ (https://www.facebook.com/GBSFIGHTERSUK/) aims to offer advice, support and information on the syndrome through my own experiences and knowledge. It has its own brand and allows people to either directly message the page or email the delegated address asking any questions they desire about the illness.

I was also fortunate to get the attention of local media and my story featured in the paper (https://www.nottinghampost.com/news/nottingham-news/university-graduate-learn-walk-again-1219284)) and on TV (Notts TV) that has helped spread the word on GBS- what it is and how to look out for it.

Furthermore, to help show appreciation for the care I received in hospital, I teamed up with my old student radio station to run a 24-hour cycling challenge. We smashed our initial fundraising targets and reached over £1,500 in total. This money will go to the unit the treated me and will contribute to a new garden where patients similar to me can go and relax in the future. A JustGiving page was set-up (https://www.justgiving.com/fundraising/wingingitforjosh) where my story was shared and where anyone could donate to such a great cause.

To round-off a spree of positivity, I have signed up as a member of the UK charity GAIN (http://www.gaincharity.org.uk/) who bring people like myself to together who offer support and encouragement to future fighters. I have done all of this simply because people shouldn’t be diagnosed with an illness they know nothing about. It made it tougher believing I was never going to walk again and that was purely down to the fact I didn’t have the knowledge needed to comprehend what I was going through. I also wanted to turn around and say for every negative aspect of my battle with GBS, I want there to be a positive. I will remember the work I have done so far since my recovery and I can always say that I went through GBS to make these positive changes in my life.

It goes to show that GBS can knock you but it doesn’t have to defeat you. It took a fair few weeks and it was extremely emotional but I got there. Whilst I continue to take Gabapentin on a slow reduction for pain relief and I may still have weakness in my legs, I am now ME once more. I am looking forward to pursuing my dream career in sports/broadcast journalism and GBS is not going to hold me back.

Other than my GBS dedicated Facebook page, I often upload my personal updates on my social media:

Email: joshuawing@hotmail.co.uk
Instagram: @wingdiddy
Twitter: @wing_josh    

The Faces of Guillain Barré & CIDP 2018: Day 17- Anne- #83

Thursday, May 17, 2018 0 Comments



Faces of GBS 2018 – Anne Hall



This is my face in 2016 before having GBS – Miller Fisher variant - for the second time. I woke on the morning of 31st December 2016 with double vision exactly as I had in 1984 over 30 years previously. This time it was triggered by pneumonia and the first time by a chest infection.

I’m 76 and live in Oxford, UK. I’m a widow with married twin daughters and four enchanting grandchildren. My reason for writing this is to encourage anyone else in a similar situation; both times I’ve recovered, although I was much worse this second time round (in intensive care for a month, on a mechanical ventilator then had a tracheostomy, feeding tube etc and populated by candida auris).

At my lowest moments, because I’d recovered before I felt I could do it again if I made the effort!!

A year has gone by and with the help of my family, friends and our great National Health Service, also a lot of effort on my part, I’m ‘up and running’ again with almost 100% recovery – just some minor tingling and a few balance issues which I can cope with.

I haven’t kept a diary, nor do I have any photos of my time in hospital or immediately afterwards, but many other GBS sufferers have and I think these are helpful for people currently battling to recover and show how we all have very different journeys. It truly is a case of ‘getting better slowly’. Both times I had the three typical MFS symptoms of abnormal muscle co-ordination, paralysis of the eye muscles and no tendon reflexes.

In the 1980s there was no treatment, we just had to ride it out, but this time I had two courses of IVIG which I definitely feel helped my recovery. So enough of me, I send all good wishes and love to all fellow GBS travellers – you can improve, stay positive!

The Faces of Guillain Barré & CIDP 2018: Day 16- Kelsi- #82




As I was nearing the end of my pregnancy with my second child, I had just visited with my doctor and decided that it would be best to go on bed rest a week before my induction date of December 8th, 2014. It was towards the end of November and I was ready to have this baby. I had struggled with higher blood pressures and I was extremely fatigued. Naturally, I attributed it to the pregnancy and didn’t think otherwise.


Before GBS


It was November 29th, 2014 when I started to feel that my 4th and 5th digits on both feet started to go numb. I talked to a couple nurse friends and they said to just take a warm bath, the baby could be sitting on a nerve. The next day, which was Sunday, my hands started going numb. At church I went and asked our parish nurse about what she thought was going on. She said she wasn’t sure but sometimes during pregnancy it is not uncommon for women to get temporary carpal tunnel in their hands. As for my toes, she also figured the baby was sitting on a nerve.

The first day of my maternity leave from work, as a middle school art teacher, my husband and I started getting the house ready for extra house guests for when the baby would arrive. It was now December 1st and I noticed that as the day went on, it got harder and harder to go up the stairs. As I was going back down to get something, I could no longer feel the bottom of my feet and lost my footing. I fell, only about two stairs, but it was the fact that I couldn’t feel my feet that scared me. I called the doctor’s office, explained what happened, and they agreed with the parish nurse. Again, I was told to take a warm bath, so I did but the symptoms remained.

The next day, I woke up to go to the bathroom. My legs were extremely weak and my balance was horrible. I hobbled into the bathroom and got a warm bath going. I was able to get in just fine but when I tried to get out, I was unable to stand. I yelled for my husband to come in and help me. It took all his might to try to get me up – I was dead weight. When he finally got me out of the bathtub, I made my way into the bedroom to call the clinic again. They said it was finally time to get to the ER. As I was reaching down to get dressed I fell again. This time I fell apart emotionally. What was going on with me? How could the baby be causing all of this?

As we entered the ER at St. Francis hospital in Grand Island, NE, me obviously in a wheelchair, they took me into a room separate from the normal waiting room. They told me that someone was going to come and wheel me up to Labor and Delivery and we would get things figured out there. When they took me up, they stuck me in a triage room, on a very uncomfortable hospital bed, and I spent most of the day in there waiting on my OBGYN doctor to get there. As I laid there, I noticed that the numbness was moving up my forearms and it was harder to use my fingers. My doctor finally showed up and decided to move me into a delivery room, which was bigger and more accommodating for all of the family that had come to support me.

December 3rd was spent being monitored and poked for blood tests. Getting up to go to the bathroom was getting harder and harder. At first my husband was able to help me get there, but then it started taking two people. Finally, a neurologist was called into assess me. He tested reflexes, asked what I could feel and couldn’t feel, but he was puzzled. He hadn’t dealt with an extremely pregnant lady with these symptoms before. That night my OBGYN and the neurologist decided that it was time to induce, in case the baby was in fact sitting on a nerve. They started the medicine around midnight to get things moving.

I was told that this baby had to come naturally, no anesthesia, because if this was a nerve issue, they did not want to stick any needles in that might worsen the nerve situation. Late that morning, on December 4th, Harper Renée Amen came into the world as perfect as can be. I, however, was worsening. We now knew that the baby wasn’t the problem.


Baby Harper


Over the next few days, I lost all ability to walk, stand, and my arms became very weak. Instead of being assisted to the bathroom, I was now being stood and pivoted onto a commode, with the help of two nurses and a gait belt. It was very difficult to get comfortable and I had to ask to be repositioned quite frequently, since I was unable to do much movement on my own.

I am not sure what day it was, they all started running together after Harper was born, but the neurologist came back in and told me that they wanted to do a spinal tap in order to diagnose me with an autoimmune “disorder” called Guillain-Barre Syndrome. The fluid results did not come back normal and it was quickly decided that I did have GBS and needed to be moved to ICU in order to monitor that the paralysis did not move toward my diaphragm. If that were to happen I would need to be put on a ventilator.  

After being moved to ICU, a doctor specializing in physical medicine and rehabilitation came in and did a nerve conduction test. This meant that the doctor would use a machine that had a hand held device which would send electrical currents throughout my nerves, and the results would be able to tell if there was nerve damage or not. It felt like being electrocuted – over and over again. After it was all over the doctor concluded that I did have nerve damage and it was confirmed that I had Guillain-Barre Syndrome.

Guillain-Barre Syndrome occurs when the body’s immune system attacks the peripheral nervous system — literally shorting out the nerves that signal our legs to move, our eyes to close and sometimes our lungs to breathe. It eats away the myelin sheath that wraps around the nerves. The paralysis is ascending, meaning that it travels up the limbs from fingers and toes towards the torso. I like to explain it like a string of Christmas lights, if one of the bulbs is removed, it shorts out the rest of the string. The same thing was happening to my nerves, if the myelin sheath was damaged, I was unable to use my limbs.

My husband, parents, brother-in-law and mother-in-law were now in charge of taking care of my children and house full-time. My husband had taken paternity leave and was able to use sick leave for the remainder of the time. My mother-in-law and my parents helped with the baby and our three year old. Sean, my husband, stayed with me throughout everything. The family made sure to bring my girls as much as possible.

The next week and a half were spent in ICU as things kept going downhill. The left side of my face began to droop. My family and friends started having a hard time understanding me. I didn’t have an appetite and was on a mechanical soft/liquid diet since it was hard to eat with my mouth drooping. My husband figured out that slushies were my best friend during this time. Lemonberry slushies from Sonic tasted fantastic and were easily spoon-fed to me. Otherwise my meals consisted of applesauce and pudding. I started losing a lot of weight, in addition to losing baby weight – about fifty pounds.


My facial droop


Eventually a Hoyer lift would have to be used in order to move me from my bed. I was paralyzed from the chest down and was numb to the touch, but any movement of my muscles caused excruciating pain. I was never comfortable and had to be repositioned often. I couldn’t even hold my brand new baby. We had to use a Boppy pillow in order for me to “hold” her.

The doctors decided to start me on a five day regiment of IVIG (Intravenous immunoglobulin) that would initially stop the progression of nerve damage and supplement the restoration of the myelin sheath. If this method would have failed, I would have had to go to Lincoln, NE for a different method called plasmapheresis. Plasmapheresis is a process in which the liquid in the blood, or plasma, is separated from the cells. In sick people, plasma can contain antibodies that attack the immune system – in my case GBS. A machine removes the affected plasma and replaces it with good plasma, or a plasma substitute. We did not want it to come to this in order to be close to family and of course the new baby.

During the administering of IVIG, I would get very uncomfortable, anxious, and started having hot flashes. My blood pressures were so high that a nurse would have to come in and give me medicine through my IV in order to bring it down. I hurt so bad, I couldn’t move, and was having such anxiety that my mind started getting the best of me and I just wanted it to end. However, it was apparent with therapy that I had hit my plateau when I started regaining some strength in my arms and hands.




On December 11th, I was able to prop up a bottle and feed Harper for the first time. Since the paralysis had stopped and improvements were being seen, the doctors began talking about moving me up to the intensive rehab unit in the hospital. However, with these improvements came more and more pain since the nerves were essentially “waking up”.


Feeding Harper


IRU would require three hours a day of rehab including speech therapy, occupational therapy, and physical therapy. I was pretty nervous about this step because it hurt so bad to move, let alone do therapy. It was December 15th when I arrived in IRU. All the nurses were so nice and I quickly became friends with them. Therapy would come in and work with me in bed and I got tired very easily. Simple movements would cause intense muscle pain. The rest of December is kind of a blur to me.

One night a few friends came in to spoil me. My coworker brought in a mini-Christmas tree and set it up with lights and everything, since we would obviously be spending the holidays in the hospital. A couple other friends hired a professional photographer to come in and do Harper’s newborn pictures. They dolled me up, doing my hair, makeup, and nails, and the photographer took pictures of me and Harper in the hospital bed.



For Christmas, the nursing staff went together and bought us an entire Christmas dinner from Hyvee. We were able to exchange gifts and try to enjoy Christmas the best we could. I was of course in a lot of pain from sitting up too long in the wheelchair and had to go back to my room early – missing out on the rest of opening gifts. I just couldn’t take it any longer and needed to sleep. By the end of December therapy had assessed that every muscle, that previously was dormant, now had a spark of life, but I was still extremely weak – especially in my legs.


Christmas 2014


January 9th, 2015 was the first time I sat on the side of the bed partially-assisted in over a month. My core was still very weak and it took a lot of concentration. It was such a strange feeling and of course pretty painful.

I also began lifting my legs!

After this huge step, my recovery started rapidly progressing. By the 14th I was standing using a machine called a “Sit to Stand” to start getting me used to being upright. It sent shooting pains down my back and legs, I was only able to stand for a couple minutes at first.

A week later the therapists were helping me stand by the side of the bed without a lift, still for a very short time each session we had.

Since things were getting a little easier each week, we got to start going on weekly outings. We went to the mall a couple times, to my favorite Thai restaurant, and out for coffee. Each time I went out I would get depressed, knowing that I would have to go back to the hospital – even though the staff was exceptional.

On our first outing 


February rolled around and on the 9th I took my first steps, re-learning how to walk. This was done with three people. One in front, holding onto my knees (since they were extremely hyper-extensive), one beside me, holding onto my gait belt, and the third wheeling my wheelchair behind me in case I fell or needed to sit down. I couldn’t feel my legs or feet, so this also was a very strange feeling. I explain it like when you sit on your left for a really long time and try to get up and walk, most people call it a dead leg, this is exactly how it felt walking.

During this whole time of being in the hospital, my husband was making a transition in careers and got a job as a youth pastor in Hastings, NE, which is a half hour drive from Grand Island. Soon, he would have to return back to work, and things would get a little more complicated for me and my mom while taking care of the kids. On the 16th I was able to walk with a walker and became more and more independent in my room. By February 20th, I was ready to go home. The staff had put together a tunnel walk for me, with “Sirius” by The Alan Parsons Project (which is the song that the Nebraska Huskers play during their tunnel walk) playing in the background, with staff and friends lining the way to the entrance. My physical therapist and I made our way out the door with me using a walker and my family trailing behind us, as the crowd clapped and cheered me on. My 81 day stay in the hospital was now over and I was on my way to going home.


Tunnel Walk


Well, kind of… instead, me and my little family were on our way to moving to Kearney, NE for a while to live with my parents. This way I could have help taking care of the girls and would be able to have someone to take me to therapy when Sean had to work. It would be another month before we would begin talking about returning to our home in Grand Island, using no assistance and being able to take care of the kids by myself. 

Since then, we welcomed another baby girl into the world in May of 2018, with no issues whatsoever. I still have issues with facial droop (especially when I am tired) and nerve pain in my legs and feet, but I am at least able to go back to a semi-normal kind of life. I don't have very much energy but I do my best to be the mom, wife, teacher, and Pastor's wife I can be, despite my residual symptoms. 



Throughout everything my trust and faith in God, my family, friends, therapists, nurses, doctors, coworkers, and children kept me going. There were definitely tears, at least once a week, but I had hope that a lot of others do not have. I know God has big plans for me and for my family, so I could always have the courage to get through it.