When Your Life is an Episode of a Medical Drama
Where do I even start…
These past two weeks have been absolutely insane. Overwhelming, scary, emotional, and now, finally, hopeful.
I’d never even heard of Guillain Barre Syndrome but now it’s something that I guess we’ll deal with forever. Possibly. Andrew’s case is more positive, all things considered, so this might just be a chapter in our book.
But I’ll back up…
About three to four weeks ago, Andrew started complaining of muscle weakness and numbness/tingling in his feet. We thought it was residual from having the flu or the result of taking medication. Within three weeks, the sensations had spread to his hands and his face, leaving the entire left side of his face paralyzed.
What we initially thought was a stroke was obviously not, and he was diagnosed with Bell’s Palsy by the VA hospital. He was given new medication and was told that the numbness was in fact from medication and should resolve itself in a day or two. When it didn’t, we luckily found a great neurologist who sent us to the ER where Andrew was ultimately admitted and diagnosed with Guillain Barre Syndrome.
When I asked the hospital neurologist if he needed to call out of work Tuesday, he pretty much sat me down and said it would be at least a few weeks.
SO… what is Guillain Barre Syndrome
GBS is a rare autoimmune disorder in which the body’s immune system attacks its own peripheral nervous system, typically damaging the myelin sheath protecting the nerves and dispersing the nerve impulse throughout the body instead of reaching the muscle. Its begins with numbness and/or tingling in the feet and often moves up the body, increasing in severity, and rendering half of the face paralyzed. The extremities become weak and/or useless and patients often can’t walk by the third week. Thirty percent of GBS patients will go into respiratory failure when the disorder reaches the organs and will need to be admitted to the ICU and be placed on a ventilator. The exact cause of GBS is unknown, though it typically follows a viral infection like the flu or upper respiratory infection. There is also no known cure, though treatment can help with symptoms. In serious cases, patients are hospitalized for months and can have residual weakness for years.
Since there’s no actual cause, diagnosis is difficult and can only be made by ruling out other possibilities. MRIs of the brain and spinal cord rule out MS, stroke/TIA, tumor/lesions, or seizure disorder. A spinal tap will show elevated protein levels with a normal white count in patients with GBS. An EMG/nerve conductivity test will determine which nerves are damaged and how long recovery might be. At best, these tests provide clues that help neurologists zero in on a diagnosis and prognosis.
Though there’s no actual cure for GBS, treatment can help reverse some symptoms and lessen the duration of severe illness. Plasma exchange and immunoglobulin therapy have been proven effective and can stop the body’s attack on itself but it doesn’t begin to repair the damaged nerves. Physical therapy follows the hospital stay; GBS patients can require anything from outpatient visits to lengthy inpatient stays at a rehab facility. Depending on which nerves and which muscle functions were lost, a therapy program is provided, as well as additional at home exercises to do on your own. Typically, GBS begins in the feet and moves up the body, then leaves the body in reverse fashion.
With Andrew’s case, we’re lucky. Because the neurologist we found was so on top of this, we made it to the hospital before the disease actually paralyzed him completely. In most patients, the trip to the ER doesn’t happen until breathing issues set in and the diaphragm is affected, so we’re lucky that the nerve damage hasn’t moved past the extremities or we would’ve been in the ICU. Andrew was admitted Monday afternoon to the Neuro step-down unit, sent for testing between then and Tuesday, and began treatment for Guillain Barre on Tuesday night. It was like being in an episode of a medical drama where every med student wants to be assigned to the rare disorder patient.
He received five IV immunoglobulin (IVIG) treatments while staying at the hospital. His last IVIG was Saturday night and he was monitored for 12 hours after before being discharged on Sunday. His hope was always to make it home Sunday for the Masters!
IVIG treatment works well; walking has gotten slightly easier but it’s still a long road to recovery. There is substantial nerve damage, and the myelin sheath that was affected regenerates at a snails pace. He has had absolutely no improvement with the numbness and tingling, so working is clearly out the question right now. He will need in home therapy for a few weeks and won’t likely be cleared to drive or work for another two to three weeks. All things considered, he’s lucky that he won’t be out for six months. At least we’re not thinking that.
The residual effects of this disorder are yet to be determined. We will have to follow through with neurology to make sure that this isn’t CIDP, the chronic version of GBS. There is also a chance that weakness can last for years, or even be permanent. Since there is already damage to the nerves, his reflexes may never return and strange “zaps” can happen at any given time or can be triggered by something random, like eating spicy food.
This strange disorder has taken over our lives right now and I’ve spent countless hours in the hospital, doing research, and wondering how on earth this could have happened to a healthy 34 year old. But I’ve also considered us lucky that it could have been worse. We’re lucky to have him home, to have an amazing neuro team taking care of him, and to have supportive family and friends, like my parents who brought us food and watched our son for hours upon hours, and my best friend who drove out from PA at 31 weeks pregnant, with her toddler, to help me and be there for me.
He may never make a 100% recovery, but we’ll keep fighting!