Reality sucks - nerve conduction test results

Reality sucks! It really does. It’s like having cold water splashed on you when you weren’t expecting it. Well, for me it was one of those days where you just want to yell for everyone to hear, “Reality sucks!”

Today (July 31, 2019) was a big day - I was going to have my nerve conduction test to see if there has been regeneration of my peripheral nerves. My last nerve conduction test was November 5, 2016 and that point I was only able to move the upper parts of my shoulders and could move my head slightly side to side. Seeing some improvements since starting physiotherapy in March 2019, I called my neuromuscular physician Dr White if he could re-do my nerve conduction test to see what improvements have occurred to my nerves. The day has come - feeling anxious and nervous as I didn’t know what the outcome would be. I started the morning typing a summary of the 3 previous nerve conduction tests from 2016. I must admit - how sobering reading how I was communicating and the severe damage this disease has resulted in. I had tests were done in September, October and November 2016. In September I was communicating by my eyelids and eyebrows plus my eyes weren’t closing completely. In October I was communicating the same way but now I was able to close my eyes. In November I was able to use some facial expressions and move my head side to side. So what will the report say today?

I arrived at South Health Campus at the Neuromuscular Rehabilitation Clinic for my appointment and there were my friends Marilyn Shoults and Karen Humby (I nickname them my 2 moms) coming for support. We go into the examination room and the EMG technician does the motor and sensory nerve conduction test - best way to describe it, it felt like a Dr. Ho stimulator, little electric pulses to test how the nerves respond. My hands seem to feel the responds more than my foot/ankle foot. We had to wait for Dr. White to finish with another patient first so it was nice to have Karen and Marilyn there to have a wee visit too. When Dr. White arrived he did some physical muscle testing by doing resistance exercises to see the strength of my muscles. After the testing was over, the time came for the big question - do you see improvement since my last test in 2016?

Dr. White is the same as when I saw him February 2019 - never wanting to stomp on someone’s hope but doesn’t want to give someone “false hope”. He can diagnose outcomes based on his knowledge and from statistical information. As I have read similar articles on the Internet, usually by the 3rd year from diagnosis where you are in your recovery, is what your remaining deficiencies will be from this disease moving forward. In addition, with my GBS variant - Acute Motor-Sensory Axonal Neuropathy (AMSAN), I also had significant axonal loss to my nerves and this is slow in recovery. It has been written in articles and supported by Dr White the prognosis is of poor recovery. So I did go into today’s appointment having this knowledge. But it doesn’t make it any easier to hear. 

My result - on paper since last seeing Dr White in February, nothing really has changed. The examinations are rated 0-5 (5 being the best outcome) and majority of mine landed between 0-1. In the physical sense he saw slight improvements like the flicking of muscles to an engaged muscles. I asked if I should be adding anything more, and really I am doing everything right. What he did say is, don’t stop the physiotherapy and massage; this would be a mistake as it would be like a sign I am just giving up. Plus the nerves/muscles will worsen without that stimulation. 

My reality: I have severe Guillian Barre Syndrome with the variant of AMSAN with significant axonal nerve loss. The diagnosis now is that I will be a functional quadriplegic. This means despite regaining some movement/strength in my upper/lower extremities, I will need to continue receiving total care at the nursing home as I will not be able to do so on my own. I will never walk again. So in time I will need to find a new joy, happiness and strength to move forward in my life. A tough pill to swallow that is for sure. Just like my recovery so far, I will need to be patient and take the time to figure things out on what my future will be like. 

The words that Dr. White said to me in February 2019 was repeated today - “Laura, Love for you to prove me wrong.” In words, don’t give up! Miracles can happen!