I'd like to share my experience in case it can help someone.
I am a 31 year old female. I had flu like symptoms (docs tell me it was most likely food poisoning) for three days a week before I started having any GBS symptoms. On April 3, 2014 I went to bed with an extremely sore neck, couldn't sleep, and got up the next day and the bottom half of my face was tingling. I got in to see my chiropractor first thing in the morning and see advised me to go to emergency as she thought it could be a complication from a viral infection. I headed to the urgent care centre near my home, my blood work looked good and they told me that I was having an anxiety attack and my face was tingling because I wasn't getting enough air. I was sure that this wasn't the case, but I went home. Over the course of the day the pain in my neck started to spread down my spine and into my hips. I was in so much pain that I could not eat or sleep. No over the counter medication did anything for the pain. The next morning I went back to see my chiropractor as my entire body was tingling and the pain was so bad. She had a good sense of my "normal" strength and flexibility and she noticed the weakness beginning and my leg flexibility decreasing. She wrote a letter asking that I be screened for Guillain Barre and advised me to go back if I started having any respritory symptoms or difficulty walking. By that evening my eyes were becoming extremely sensitive to light and my legs were feeling rubbery and unbalanced. We went back to urgent care where they laughed at the letter and told me I had a UTI and that I would feel better in the morning once I started on antibiotics. The pain continued to get worse and I had another day of no eating or sleeping. I tried to give the antibiotics 24 hours, but by the next afternoon I could no longer get out of bed without using my arms to move my legs off the bed. We had researched the hospitals and went to the one with neurologists this time. An emergency doctor looked at me, and by that time I was starting to do poorly on a lot of the muscle tests and was having double vision. He called for a neuro consult. The neurologist examined me and recommended a spinal tap to which I agreed. The results came back with elevated protein and they then sent me for an MRI, chest x-ray and EMG. These hours all blur together, but I somewhere along the way I lost the ability to sit up, close my eyes, close my mouth, bend my legs, urinate, deficate and my breathing was down to about 1/3 of normal, but I luckily just avoided having to have a breathing tube. After the EMG I was diagnosed with the Miller Fisher variant of GBS. I was given a small dose of IVIG (all they could get). I stayed in the ER for about 1.5 days and then was transferred to the neuro ward. I underwent 5 days of IVIG and then was monitored for a few days. These days were largely sleepless as I was in a lot of pain and wasn't allowed any narcotics for fear of depressing my breathing further. I had lost most of my reflexes and could only have pureed food. I needed catheters to urinate. However, each day that I got IVIG I improved bit by bit. Towards the end of my stay in neuro I regained control over my bladder and bowels. Throughout my time I had a lot of family and friend support which was invaluable. Even though I lost the ability to sit up, I continued to get my boyfriend to pick me up, put me in a standing position and help me shuffle around as much as I could even though it was exhausting and I walked like a drunk duck. I lost a lot of feeling in my hands, trunk and legs, and what I did feel was pins and needles. I started out around 125 pounds and ended up around 108 pounds. I lost a lot of muscle, strength and stability. Once I had continued to show improvement for a few days after completing IVIG I was transferred to a rehabilitation unit. I was there until May 21, 2014. I worked with physiotherapists and occupational therapists to fix my gait, work on stability and balance and strengthen my muscles. By the time I left my walking looked relatively normal, but I was still quite weak compared to my "normal" (couldn't jog, it was really difficult to get up off the floor, etc.). When I left I was on 2400 - 3000 mg/day of gabapentin as well as amitriptyline. I had a lot of fatigue, dizziness, heart rate fluctuations and high blood pressure (all abnormal for me). I entered out-patient physio and am still going today (also working out every single day at home), but probably won't be for much longer. My hands and feet had very abnormal/painful numbness and tingling with inaccurate heat sensation. My entire right leg had the tendency to go numb.
To deal with the pain I ended up using a Dr. Ho machine (like a TENS machine) to help me sleep. This was a tip that I got from a nurse that dealt with her own nerve pain from fibromyalgia and it helped distract me from the pain. I also got weekly acupuncture and active release sessions which I think have helped me tremendously as I have had a lot of muscle pain. I also have taken various supplements in hopes of supporting my body in healing as quickly as possible. I eat a clean, vegetarian diet and focus on making sure my body has the proper fuel to heal. I started weening off gabapentin as soon as I got home (300mg/week) and feel much better. I would go through 3 days of feeling terrible each day I decreased, but then would feel much better. I am completely off it now and my dizziness, fatigue and heart/blood pressure issues have all gone away.
It is about 4 months out now and I have been working from home part time for the last month (slowly building up my hours). My hands are completely normal now (for about the past week). My left foot is about 90% better and my right foot/leg is about 80%. The same goes for my face. The left side is good, but the right is probably about 2 weeks behind, so I still smile and blink a bit unevenly. I feel like I will be very close to my "normal" by the 6 month mark, if not sooner.
Hope this helps someone out there! Stay positive (but allow yourself a pity party every once in awhile) and work hard (but respect your body's new limits).
