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Guillain Barre Syndrome (GBS) is considered rare, so it is probably not the first thing clinicians think of when assessing a patient. Unfortunately, some patients live with the symptoms and perhaps irreversible damage for years. It only took me 7 1/2 months to get my diagnosis and treatment after an atypical presentation.
Why? Because as a hospital administrator I recognized that my staff was human; and more importantly, that no two patients and their presentation are the same. I promoted safety by advocating for patients and encouraging self-advocacy. I wanted our patients to think critically, ask questions and speak up with any concerns. Patients and their family members are in fact, important members of the care team. By fulfilling their self-advocacy role, patients help prevent medical errors and delays in treatment.
February: In my case, I began strongly advocating for myself when my condition worsened, and my neurologist didn’t seem to be looking beyond his diagnosis of Idiopathic Peripheral Neuropathy. The word idiopathic means “unknown cause” and is a catchall for everything that may have caused the condition. While it is a good temporary diagnosis, patients should continue to work with their physician to identify the underlying cause(s).
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March: If your physician doesn’t respond to your voiced needs, then start looking around for someone else who can help. In my case, my condition progressively got worse, and my primary care physician wasn’t interested in seeing me – probably assuming I was in good hands with the neurologist… a specialist. I had to stop some of my work due to physical limitations. I found an infectious disease specialist (given risk factors in my lifestyle), so I could at least rule out Lyme and other related diseases. Around the same time, I learned about a benefit offered by my husband’s employer for virtual second opinions.
April: I contacted the second-opinion service, and a family practitioner took a full history from me over the phone and reviewed my MRI and lab findings. He then had two neurologists at academic facilities review my case and provide recommendations. Both suggested Guillain Barre Syndrome (confirming my suspicion from my Internet research) and recommended I urgently see a neurologist at an academic medical center because they are more likely to have encountered this rare condition.
May: Getting to see a specialist at an academic medical center isn’t always easy, and it takes time. Before I even received my report back from the reviewing neurologists, I started looking for other neurologists in my area and at the large medical centers in nearby Los Angeles. I learned I could only be seen after they received a referral from another physician, so I started calling, and my neurologist made a referral to UCLA and sent along his records. I sent the report I had collected. Then, some waiting for my case to be reviewed and accepted. Finally, I had an appointment… in July! Ugghh!
July: My initial appointment with a specialist in neuromuscular disease finally came, and I returned two weeks later for more lab testing, an EMG and lumbar puncture (spinal tap). After two additional weeks of waiting for all of the test results to come back, the results seemed to reinforce my tentative diagnosis of GBS.
August: I returned to UCLA to confirm my diagnosis and discuss my treatment options and plan. She referred me for IVIG treatment in my home, and it was scheduled and completed today! Yipppeee! I’ll have more appointments and another couple of rounds of treatment between now and December. In January, we should have some idea of how much recovery is likely. Recovery from GBS is a slow process!
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The primary intent of this post is to increase awareness of GBS and help some individuals who feel stuck in their situation to recognize the need for them to speak up and actively follow up to keep the process moving. There were several delays due to messages not received, typos, wrong phone numbers and waiting for records. Had I not been as engaged as I was/am, I would not have received treatment this week.
A second goal is to caution clinicians about being too blasé and too quickly lumping patients into an idiopathic or other “catch-all” diagnosis. In the case of GBS, timely treatment prevents permanent or more severe damage to the nervous system. This condition is very disruptive, even to those who don’t become paralyzed; spending months in the hospital on a ventilator. These patients are, however, the ones who are most likely to get “timely treatment.”
The rest of us have to endure family who initially doesn’t understand our new fatigue, inability to safely drive or walk up the stairs/curbs, open anything or take a shower without the real fear of falling. We are stressed by the unknown and having to stop working… not knowing if or when we can return. And, the frustration of a fall and the inability to pull ourselves back up … even with help. Or, wanting to sleep in your own bed so bad that you are determined to get there even if it means crawling up the stairs. And, isolated the safety of a room until family returns at the end of a day to provide assistance after finally recognizing the seriousness of the condition.
If you think your experience might also help others feel free to share it in a comment, because diagnosis matters!
