Living with Guillain-Barre Syndrome

On May 7, my dad was working in the yard. He is a very strong 83 year old who loves any type of outdoor work (e.g. gardening, flowers, mowing grass, etc.). He began having severe shoulder, back, hip and neck pain that he thought was related to too much outdoor work. This went on for 2 weeks. The pain would get better and then worse. On Saturday, May 16, the pain worsened. On Sunday, May 17, Dad began having balance problems. When he would walk, he looked “like a baby deer”–very unsteady. He went to his medical doctor who sent him for an MRI. The MRI showed low thyroid numbers but was inconclusive for anything else. He went back to the hometown doctor who knew Dad well enough to know that this type of MRI reading would not cause his symptoms.

On Monday evening, Dad’s hometown doctor sent him to a medical center two hours away to see some specialists.

The next morning, another MRI was done and much blood work, this time showing multiple mini strokes which did not seem to be causing the balance issues. There was also a bulging disc and low B12 counts. We were told that the combination of all these things was causing the balancing issues. He was given medication to raise the B12 and the thyroid counts and for the pain in the back, shoulder, neck and hips. He progressively got worse over the next day. On Wednesday, he was going to be sent home with home health care for 2 days per week. My sisters and brother kept saying over and over “something is not right—dad is getting worse.” A very wise therapist saw dad and said that his going home was not possible because his walking was so bad. On Thursday morning, the neurologist suggested that a lumbar puncture could be done along with a nerve conduction test but that the testing would be hard on dad. My sister insisted that we wanted every possible avenue explored.

A nerve conduction test was performed that morning which resulted in a diagnosis of Guillain Barre Syndrome. This was verified with a lumbar puncture the next morning. Treatment was started immediately. It was IV infusions of immunoglobulin for 4 days which is supposed to halt the progress of GBS Today is Wednesday, May 27 and I am happy to report that Dad is in a rehabilitation center and in physical and occupational therapy every day. My bottom line for anyone who may read this is: if you have an intuition that something is not right with regard to a diagnosis of a family member, particularly one of age, follow that instinct. I am convinced that if my sisters and brother had not really pushed, GBS would have not been diagnosed so quickly, treatment would have been delayed, and the effects of GBS could have been so much more detrimental. I am convinced that sometimes, a person’s illness is attributed to age and the follow through is not as good. The prognosis for Dad seems good that he will return to full mobility—he will just have to slow down the yard work a little.