Meeting Dr. Chris White - Neuromuscular Physician

On September 22, 2018, my friend Marilyn and I had the opportunity of attending an education session at Mount Royal University hosted by the GBS/CIDP Organization. The topic was GBS and IVIG treatment (intravenous immunoglobulin). The last speaker was Dr. Chris White, a neuromuscular physician from Calgary’s South Health Campus Hospital. In his presentation he described how IVIG treatment works depending on the type of GBS variant you have. In the presentations earlier left me a bit disheartening as I keep hearing people’s questions asking, “I have been taking IVIG treatments for the past 2 years..”. I thinking, “Are you kidding me? I only got in the beginning, September 2016 and now it’s 2 years later. Has my recovery been slow because I haven’t received additional IVIG treatments while in hospital?” But Dr. Chris White’s presentation helped me turn my feelings around. There are various variants of GBS and how you use IVIG treatments depends on your variant. Okay, feeling better about things. I had a chance meeting him at the end of the session in which he wrote a note for my GP that we should consider sending a referral to the Neuromuscular Rehabilitation Clinic. Of course, we did right away!

The day has finally come, 5 months of waiting and today (February 13, 2019) I had my appointment. I was full of nerves, excitement and butterflies in my stomach. Had to remind myself to take deep breaths to calm myself down. My brain going a mile a minute of what would might I hear. I was so fortunate that my friend Karen was able to take the Access Calgary bus with me and my friend Sara was able to meet us at the hospital to attend my appointment. 

Met Dr. Braun first and gave my history of the past 2.5 years. He did two non-invasive tests - sharp/dull test with a paper clip testing my sensation levels on my feet, legs and arms; and second was my reflexes by using the reflex hammer. I did pretty well differentiating between dull and sharp sensations but as I expected I had zero reflexes on my all joints. Then Dr. White came in and Dr. Braun repeated my history and the outcomes of my tests. Then Dr. White asked what I hope for - I said I would be happy if I could walk with a walker; but if I my outcome is to remain a wheelchair chair, I would like to be in a powered wheelchair and have function in my right arm/hand so I can go back to work again. Plus having lost 125 lbs I should be able to get a smaller width wheelchair too. Allowing me get through my doors, literally. 

Dr. White said he is not one to take away hope. Another supportive physician on my team. He asked if I had any specific questions for me. First on my list - what variant of GBS do I have? Is it ADIP, CDIP, AMAN, or AMSAN? Reading the symptoms for each variant I had a feeling I knew the answer but he confirmed it that I have AMSAN. This stands for Acute Motor-Sensory Autonomic Neuropathy. Not only were peripheral nerves damaged but so were autonomic nerves damaged impacting my bowels, bladder and diaphragm as well as affecting my blood pressure (hypotension/bradycardia). With great relief as he knew it weighed on me, he said I was seen by 3 neurologists and one was his colleague (neuromuscular physician) during my acute phase of GBS and from the notes he read I received excellent care from the ICU medical staff. Plus my IVIG treatments were appropriate and the other treatment - plasmaphresis would not have changed my present outcome.

My next step - Dr White will be sending in the referral to see the physiatrist (Rehabilitation Physician) as well as the clinic’s Physiotherapy and Occupational therapies for follow up. 

Stay tuned.