Rob's GBS Success Story

My GBS Story.

I am writing about my experience because I hope it might help others who have the misfortune of encountering this disease. I believe mine is a story of success and an example for an optimistic outlook. Hearing the success stories of others was helpful for me during the early stages of hospitalization. I am roughly 6 weeks today since initial symptoms. I just returned from nearly 3 hours of physical therapy where I did countless exercise’s requiring strength, balance, and endurance including a 15 minute run on the treadmill. Only 5 weeks ago, I was – for the most part – completely paralyzed from head to toe. The thought of any form of exercise did not seem even remotely possible. However I am doing it – and if you are presently going through this – the odds are in your favor that you will too. I went from completely normal, actively exercising 4 days a week and enjoying my free time playing with my young children, to my absolute low point in only 8 days’ time. The sudden onset of this disease, the rapid progression, the scope of impact on your body, and the unknown of how far the downward progression will continue – is nothing less than terrifying. But the good news – the downhill progression and appearance of new symptoms will stop. And when it does, it may have kicked your butt – like it did mine. However, you will be back in control and it will be your time to begin recovery and take back your body. Your symptoms will begin to fade, your strength will begin to return, and you will begin to regain the capability to go about your daily activities. Progress might be slow compared to how quickly you lost those capabilities, however progress will be certain. And each bit of progress, no matter how small, is an accomplishment which will inspire you to keep pushing forward.

GBS has changed me – physically and mentally – probably in many ways which I have yet to understand. I still have numbness in my feet and partial paralysis in my face; however that is not stopping me from doing anything I wish to do. I still get tired often. My goal is to be in better shape than I was before being struck with this disease, and I believe I will reach that goal. When I tell people that there is nothing more important than your health, that has more meaning to me now having gone through this then when I may have casually made that statement in the past. The definition of a co-worker, a friend, and family is now blurred. The support from these people is about the only thing that brought tears to my eyes during this experience since I believe that is the sole thing which allowed me to stay positive and avoid slipping into a very dark mental state. To those people who extended that support – I am forever grateful. I now find myself with fears which I did not have before, one of them being – will this come back? Fortunately the odds are in our favor that it will not, and I will not let that fear run my life. I do not consider myself a very religious person; however I often find myself recalling a statement made by one of the technicians in the hospital – God only gave you this challenge because he knows that you are strong enough to beat it. I never questioned why this happened to me, that would not be productive. GBS flat out sucks, however of the things that it could have been – I’ll take it. The statistics show this is a one-time deal which you are very likely to make an excellent recovery from. I am a living example of that and I hope others who may encounter this disease will have an outcome which is similar or better than mine.

I debated whether or not to include a chronology of the events which took place, and I decided to include that below in case it might be helpful for anyone.

Day 1 – 4/5/2012 – First symptoms – numbness in both legs from my waist down, pins and needles in both feet. Seemed like a past sciatica episode, went about my normal routine.

Day 2 – Same symptoms however more severe, this seems to be different from past sciatica experience. Walking is a little off balance. No appointments available with my orthopedist so decided to go to the ER. They sent me home after ~1 minute exam with muscle relaxants and pain killers, diagnosed as sciatica.

Day 3 – Woke up early, numbness was now in my arms with pins and needles in both hands, also complete numbness in my tongue. I went to rub my eye, and wound up punching myself in the nose. Walking was becoming difficult, knees wanting to buckle. I knew something was seriously wrong, went to another ER. After a more thorough exam including a cat scan, I was told that I would need to follow up with a neurologist and was again discharged. At this point I could hardly walk. After making it to the waiting area with help, I sat down and refused to leave. I was brought back into the ER (now in a wheelchair) and the on-call neurologist was paged. After several MRI’s (lumbar spine and then head/neck), countless blood tests, and thorough examinations from 2 neurologists, preliminary diagnosis of GBS was made. I was admitted to the neurology cluster unit for constant monitoring.

Day 4 – Symptoms more severe, walking or even standing was no longer possible. Waiting for spinal tap to confirm diagnosis before treatment can begin. Spinal tap given bedside later that night due to unavailability of radiologist for x-ray guided procedure. This was my first feeling of real “fear”, as I remember the bed being bumped by visitors trying to reach my roommate as I had a needle being inserted into my spine. My nurse at the time stayed with me and held my hand through the entire procedure which lasted ~30 minutes, ~10 minutes of which needed for the fluid to drip out through the needle which was now placed in my back. Precautionary measures for blood clots started including daily injections in the stomach and inflating cuffs on my calves. The families Easter celebration was cancelled. Preliminary results indicating high protein count strengthens the likeliness of GBS. More consultation needed before treatment can begin.

Day 5 – Symptoms more severe, numbness moving up to my ribcage. Real weakness was now setting in, growing difficult to shift my position in bed and raise my arms and legs. Neurology team discusses IVIG treatment with me and runs additional blood tests. First of five treatments begins at 4PM.

Day 6 – Sleeping was now becoming impossible since I can no longer shift my body to find a comfortable position. I find myself staring at the clock, dozing off for a few minutes here and there. Morning comes around, and the hope for some sign of relief after the first IVIG treatment was clearly not going to happen as I realized that the numbness was now everywhere and there was no part of my body that I could feel. Physical therapy evaluation begins. It takes two people and a walker to stand. A few uncontrolled steps with my feet are possible; however they seem to land wherever gravity takes them. It was clear that I would not be going home after this, acute rehabilitation would be needed. The neurology team finds me with the physical therapists and question why I am having difficulty speaking. I had figured it was due to lack of sleep, but now they are seriously concerned with respiratory impact. Respiratory tests ordered every 6 hours, to continue throughout my stay in rehab. Back to bed, waiting for second IVIG treatment at 4PM.

Day 7 – Not sure I will ever sleep again, probably only a few hours of sleep over the past several nights combined. Fear of going on a respirator is now constant. The routine is now well known – vitals every 2 hours, respiratory tests every 6 hours, blood drawn around 7AM each day. If I do manage to doze off, no doubt it will quickly be interrupted. Another day of increasing overall weakness, wondering if the downhill progression will ever stop and what can possibly go wrong next. I soon have my answer, as my heart rate spikes into the 130’s – at rest, more than 2 times my normal resting heart rate. Doctors treat with a beta blocker. This is later confirmed to be autonomic dysfunction, another GBS symptom. Eating is becoming a serious effort, swallowing is a new concern. I am now spending virtually all of my time in bed, muscles becoming extremely tight and seemingly disappearing at the same time (apparently an expected result of being in bed for prolonged periods of time). I welcome the physical therapy visits who force me to take a few steps, my respect and appreciation for the staff growing by the day. I only wish they had more time, as my sessions only last a very short time once per day. My third IVIG treatment begins at 4PM.

Day 8 – Another long night. The doctor’s reluctantly prescribed a sleeping pill since they did not want to mask any symptoms, but it had no effect. I was too nervous to sleep. My morning routine now consists of checking my own body to see what has gone wrong next – how far can I raise my arms and legs off the bed, can I shift myself in bed, etc. Today turns out to be to worse day yet in my downhill progression. I can barely raise my arms and legs off the bed at all with all of my effort. Ten days ago, I was bench pressing 120 pound dumbbells in the gym. Attempts at physical therapy are seemingly useless, as it now takes 3 people and a walker to stand – 1 person at each side to hold me upright and 1 in front of me pushing against my knees to keep them locked. At one point during this day, one of the technicians actually picked me up like a baby from a seated position to place me back into bed. On this day I felt completely helpless. Fortunately this would turn out to be the low point. I also had an echocardiogram to check whether the persistent problems with high heart rate and irregular blood pressure have caused any damage to my heart. I had my fourth IVIG treatment.

Day 9 – Another long night. As a fire alarm sounds and the door shuts – I wonder how I would make it out if needed? Not possible on my own, completely dependent on others. Later, my morning self-check reveals something surprising – I feel stronger than yesterday. Sure enough, I can raise my arms and legs slightly off the bed now. I am able to take a few steps in physical therapy, however still needing the help of 3 people. The day does not end all positive however, as the paralysis has now moved to the right side of my face. I can no longer blink (or close) my right eye, or move the right side of my lips. As a result, I can no longer close my mouth and now having serious challenges eating. Respiratory tests are also difficult as I cannot form a seal around the mouthpiece to measure my lung capacity and strength. I received my fifth and final IVIG treatment.

Day 10 – This was the longest night yet. Since I could not close my right eye, I was struggling to sleep with a piece of gauze and tape holding it shut. But far worse; since I could not close my mouth – my throat would become so dry that when I would manage to doze off I would wake up gasping for air – I was certain that the respiratory concerns were finally a reality, however; with a few sips of water – which my mouth and throat seemed to absorb like a dry sponge – I was able to breath. This would be the routine for many nights to come; fortunately the respiratory concerns of my doctors and my own biggest fear never actually happened. I was very fortunate. This day would also bring yet another progression in symptoms, the facial paralysis had moved to the left side of my face. Fortunately it would never get as bad as my right side which had no movement whatsoever, however eating as well as speaking was now a serious challenge.

Day 11 – The morning status updates to the family now consist of whether or not there are any new symptoms. Today there are none. Strength is not much better, but more importantly it does not seem to be any worse. Resident neurologist introduced some doubt about the effectiveness of the IVIG treatment and suggested possible need for plasmapheresis. That would be nearly a 2 week extension in my hospital stay. This would not help me to sleep any better tonight.

Day 12 – No new symptoms. Today I had my EMG test, which consisted of a series of electrical shocks to measure the conductivity between two points to determine the amount of damage to the nerves and hopefully confirm the original diagnosis. Not realizing it at the time, I had hit the jackpot with my primary neurologist who personally conducted the test. Apparently the test results require very special expertise in evaluating, and having the doctor personally conduct the test is invaluable and apparently a very rare practice. I had fallen right into the care of an excellent and rare neuromuscular specialist with first-hand experience in evaluating and treating this rare disease. Luck was on my side. The test revealed severe damage to my nerves, and further confirmed the diagnosis was most likely to be GBS. My plasmapheresis fear was put to rest by the attending neurologist for the week, adding that would only serve to waste the IVIG treatment since all of the “good stuff” which was added to my blood would now be flushed out. Decision was made to allow the treatment which I had already received to do its job.

Day 13 – No new symptoms. Learning to deal with the challenges of eating and speaking with the facial paralysis. Some progress in physical therapy – able to take some steps today without the 3rd person supporting my knees. Definite progress. Neurologists optimistic that the treatment is working.

Day 14 – No new symptoms. Neurology team ready to release me to acute rehab center since my condition seems to have plateaued, pending clearance by cardiology which was also given based on good results from the echocardiogram.
Arrival at the rehab center brought new fears as I realized that I would no longer be hooked up to the various machines which provided constant monitoring which had frequently brought nurses quickly to my bedside when my heart rate had spiked or a lead had fallen off. Not realizing until then, that was a safety net which I had left behind at the hospital. More fear, asking the physical therapy doctor for assurance that I was out of the woods since I had made it to rehab resulted in a story of a prior GBS patient who had respiratory setbacks while in rehab and needed emergency action and further hospitalization. Adding to that, this had apparently occurred not only once, but twice to the same unfortunate patient. As I prepared for rest that night, I made sure my hand was on the call button for the nurse and that it was secured so that it could not possibly fall from my reach. I would later find out that pressing that button was mostly useless, since it would often be minutes (sometimes 30+) before someone would respond. Another fear now, realizing that if I actually did need help, I probably would not get it. I thought about options – dialing 911 on my phone but what would I say? My only plan if I needed help – press the button and throw whatever was in my reach to make as much noise as possible, if I was able. Fortunately, I never needed urgent help in rehab, but this shows how your mind might work in this situation.

Days 15-23 – My daily rehab routine included 1.5 hours of physical therapy, 1 hour of occupational therapy, and 30 minutes of speech therapy. Progress was clear each day. Barely walking with a walker (with support from the therapist) on the first day; to walking with forearm crutches by the end of my 10 day stay. My strength was coming back, I was learning where to place my feet while walking without looking at them, and my balance was slowly but surely improving. My core strength was gone, my back hurting after only minutes on my feet. But that was improving as well. My rehab stay included some heart rate spikes due to the autonomic dysfunction which would sometimes stop me from pushing as hard as I wanted, as well as some abnormal liver functions which are still under investigation. But after 10 days, I went home to my family only needing crutches for balance.

Week 4 – There is progress every day. I have started outpatient physical therapy 3x per week, and am doing daily exercises at home. I am pushing myself, but find myself needing a lot of rest. I am now sleeping 12+ hours at night, and taking naps in the late morning and early afternoon. I have reached the 4 week milestone, which is apparently the point where progression of the disease is not likely to continue. I feel in my own mind that I have beat this and nothing will stop me now.

Week 5 – I ditched the crutches. I feel myself getting stronger by the day. My balance is still really off. If someone bumps me (or the wind blows too hard 🙂 ), I will probably fall over. The numbness is still there in most of my body, but fading. My hands feel “almost normal.” My face is coming back, but mostly on the left side. My eyes are driving me nuts – since my left eye blinks normally and my right eye does not – one is always much drier than the other which makes it hard to focus. My heart rate is stabilizing, and I have cut back on the beta blocker. I made it to my daughter’s communion this week – my goal from early on. Even better, I made it on my own legs – and with no help.

Week 6 – I am feeling pretty good now. Another milestone for me – I was able to pick up my 5 year old daughter for the first time and walk around! Later in the week – my 8 year old! I am coming back. I also went back to the gym this week, one time at least. It was a reality check to see how weak I actually am still at this point. I am functional, but weak. As I understand it now, I only have use of those portions of my muscles which my brain is able to or has re-learned how to control. The rest will come back as the nerves heal over time. I also attended a local GBS/CIDP support group meeting. I realized how fortunate I am with my experience and my recovery. My primary neurologist also attended the session – I think she will be getting a lot of phone calls. One person said that she has been searching more than 10 years for a doctor like this – one that I just happened to “get” by total chance in location and hospital selection. Unfortunately I have also gained some fear this week both in reading online (for the first time since hospitalization) and attending the support group. That is – that chance for recurrence. The odds are in our favor, since the chance for recurrence in GBS is less than 10% (the highest percentage I have found in my online research, many sources stating the chances as less than 5% and some only 1-2%). The other fear would be if in fact I have CIDP (a chronic condition with GBS-like symptoms) however this is unlikely based on my symptoms/progression and EMG results. I have also been advised to avoid all vaccines, and will be sure to keep my distance from anyone in the family who brings home a virus of any kind.

I hope my story is in some way helpful to someone. I am sorry it is so long, there is just so much to share. Thanks for reading. -Rob