It’s been about a year since I posted anything here, but I wanted to share my story.
I came down with my first symptoms of GBS May 8th, 2015. I had had a persistent cough that later matured to a sore throat and dual ear infection. I treated it with antibiotics and observed that my taste had gone away, though at the time I assumed it was Omnicef - the antibiotic prescribed. The morning of the 8th I woke up with legs extremely sore as well as a sore back. It felt as if I had tried to move a couch the day before, but I hadn’t done anything out of the ordinary. That day I also noticed it was significantly harder to get out of my chair at work, get into the shower (stepping over the border of the tub to get into the tub / shower combo), and I observed an instance or two where my fingers didn’t go exactly where I told them to.
Over the next week, I noticed that walking was a lot harder, my strides were much smaller, my legs and back were sore or painful, standing from a seated position was very difficult, and I continued to have no sense of taste - except for chocolate. Eating was very difficult as everything tasted like numb tongue.
I fell Monday the 11th and had to wait until that Thursday to get to see a doctor. I knew something was wrong, but wasn’t sure if I was coming down with diabetes, if it was some form of potassium deficiency, or what. My feet were numb and tingly and it seemed to be progressing slowly upward. I also observed some numbness in my fingertips.
That Thursday, the general practitioner I met with ruled out neurological symptoms and suggested that it could be blood clots in my legs. He also ran a blood test which I was hopeful would find something concrete as I disagreed that it was a blood clot issue. Honestly, it was very deflating as I was consumed that week with fear and hope of getting answers.
The next morning I was getting ready for work. At this time I had to resort to dressing laying down on the bed due to difficulty lifting my legs. I went downstairs and sat down to put on my shoes. When I got up out of the recliner, my knee buckled and I fell to the ground. I got up a little bit later, got back into the chair and tried again, only to fall again. At this point I called off of work, notified my wife, and asked my parents to come over and make sure I was safe. I was hopeful the ultrasound the doc had ordered on my legs would be carried out that day.
My wife came home and drove me to the ER, where the attentive nurse practitioner quickly observed that my mouth wasn’t moving properly and that I could not smile. They ran a CT scan to assess that I had not incurred a stroke and then transferred me to the local hospital that featured a very good neuro unit. The nurse practitioner was convinced she was looking at GBS.
At the hospital they ran a lumbar puncture (spinal tap), MRI, and eventually an EMG. The lumbar puncture was very intimidating, but absolutely painless and without complication. The EMG was tough, but ativan helped. The diagnosis indicated that I did indeed have GBS.
We began treating me with IVIG and monitoring my breathing with a mind to put me on a respirator if it degraded. All the while, the numbness crept up my legs, down from my fingertips, and down from the tip of my tongue.
I wasn’t able to eat much, walk, or bathe. I could still move, though my legs didn’t lift very much and it was incredibly hard and exhausting to even sit up in bed.
The IVIG helped and infused fresh strength into my legs. After treatment completed, I moved to an inpatient rehab facility in town that worked frequently with neuro cases. This place was amazing and my therapists were fantastic. They set me up with a wheelchair and I could wheel myself around easily, despite the numbness and imprecision of my hands.
I worked hard in therapy, doing anything I was asked. My goals were to stand for short periods of time, walking with a walker (or on the parallel bars) and being able to handle stairs. I worked on endurance on the hand bikes and hand/foot exercise bikes.
Things were looking very good for me and I was even allowed to transfer to the toilet on my own at the end of my rehab stay, 5 days before I was to be discharged, I noticed that I could no longer smile and my range of facial expressions was way down. I alerted the nurse and talked with a doc or nurse practitioner the next day (a Sunday). The next morning I was given another CT and sent back to the hospital for treatment as they believed that the GBS was reasserting itself.
That stay they put a port in my artery in my neck and performed plasmapherisis (plasma exchange) every other day for 11 days. It absolutely drained me and took the life out of me. I couldn’t do much at all and the strength and skill I had rebuilt in inpatient rehab degenerated rapidly in that hospital. It was a dark and tough time, but eventually I was released back to inpatient rehab.
The second inpatient stay was okay, though I wasn’t as strong as my first stay and I wasn’t in as good of shape by the time I left. After a few weeks I was released back to home and returned to my faithful and loving wife after a 45 day total stay composed of 4 different hospital / rehab stints.
Walking around home was hard with a walker and I fell somewhat frequently (often my strength gave out on the stairs as I had to rely on my hands to pull me up for the most part at first).
Outpatient rehab took some adjusting as the first day they challenged me to go even when I was exhausted and felt unsafe to go on. I fell and that really hindered that relationship as good trust with a therapist is important.
Pain and hypersensitivity were an issue. My feet were extremely painful and were swollen by the time I left the hospital. Compression stockings and knee braces helped a little, as did velcro shoes that I could fasten myself (though I had to tape on some tape to make the velcro straps accessible).
My wife and I would go out to the movie theater to give me an excuse to walk a decent amount of distance. I’d need to rest on my walker periodically, but would eventually make it in. We’d find many similar excuses to get out and get exercise every day in order to work on my strength and endurance.
Outpatient therapy worked on my technique, posture, and balance. They also fitted me for AFO devices that supported my feet and combatted my “foot drop”, helping me walk without tripping the feet on the floor. I kept pushing things trying to move from a walker to a cane and eventually I succeeded with a cane with a triangular tip (good for applying pressure from any direction) and discovered that I could use a cane in some circumstances.
As time went on, the circumstances grew and I was able to move entirely to a cane by late August or early September. That meant a huge quality of life increase for me as it let me go to places I could not otherwise reach and carry things with me in my off hand.
I began working remotely part time for my employer (I’m a software developer) and tried to increase the number of hours in a day or number of days in a week every week based on what I was seeing.
By the end of September I discontinued occupational therapy and took up assembling legos instead as very good dexterity work. My facial weakness had resolved itself by early August and I never did any outpatient speech therapy.
By November I was walking to some extent without a cane in some circumstances with my therapist. It was difficult and awkward, but I had accomplished the goal of being able to walk in safe circumstances and short distances unassisted. We discontinued my therapy as my technique had arrived but things would continue to improve as my nerves healed and strength returned.
November also saw a large increase in the pain as my feet healed more. I was at my highest pain levels from November to January and it required constant elevation of the feet in the evening, icing them to help silence the pain and both continuous release and acute pain medication.
By mid-January I returned to work full time on site and ended long-term disability. My wife would drive me to work and pick me up at the end of the day and this time together was nice.
By March I was driving again and my wife and I had moved to a new house. During this time I was also tapering down various pain medications. By late March I was on no medication. This was also around the time when I felt truly myself again and uninhibited and without significant handicap.
We let my handicapped placard expire in late June. My wife and I also began the practice of walking at least half a mile each evening.
All in all, from initial symptoms to return to normal function, it took me about 10 months. I still have numbness on my feet and mild pain, but if I don’t touch my feet much and wear shoes that don’t put much side or top pressure on them I’m okay (I wear mesh crocks with socks underneath and these work very well).
Just recently, the inpatient rehab hospital asked me on as a volunteer to talk with GBS patients they encounter. I’m thankful to be able to share my story, coping mechanisms, be a listening and understanding ear, and help others going through what I’ve gone through.
I anticipate full healing in my feet and an eventual return of my full endurance, but recognize the importance of investing in that by reasonable exercise and working for the capabilities I want.
If you’re going through GBS, I recommend taking life day by day, relying on God for strength, seeking to bless anyone who you get to interact with, and focusing on the task at hand, whether it’s to try to take a step or working with a tech to get dressed for the day. Life was all about meeting the challenge of the hour, whether pain or rehab exercises or self-care. It was about relying on your support system and trying to find new ways of meeting challenges - whether trying a different walker, taping feet that curl up at night otherwise, icing to address pain, or knee braces to address wobbly or hurt knees.
Talk to others too. GBS is weird and the symptoms and side effects can be bizarre. Other people have seen the same strange stuff and can help you through it.