What is Guillain-Barré Syndrome?
[5 min read]
In this article:
- Guillain-Barré Syndrome is an autoimmune disease in which the immune system attacks the body’s peripheral nerves, nerve linings or the nerve itself.
- The condition most commonly presents with rapid onset of tingling and numbness in the arms and legs. Treatment depends on symptoms and timing of diagnosis.
- Current analyses suggest little to no correlation between Guillain-Barré Syndrome and vaccines. In fact, vulnerability to infections like influenza is a higher risk factor for Guillain-Barré Syndrome.
Ahead of the recent the release of his new album, musician Sufjan Stevens also revealed that he is recovering from Guillain-Barré Syndrome (GBS), a rare autoimmune disorder in which the immune system attacks the body’s nerves. In most people with GBS the condition initially presents as weakness and tingling in the hands and feet which can spread quickly and sometimes result in paralysis. In his announcement, Stevens reveled that his condition had affected his mobility, but with the help of his care team he was ultimately on the road to a slow recovery.
"Last month, I woke up one morning and couldn’t walk. My hands, arms and legs were numb and tingling and I had no strength, no feeling, no mobility,” Stevens wrote on his Tumblr account. “My brother drove me to the ER and after a series of tests— MRIs, EMGs, cat scans, X-rays, spinal taps (!), echocardiograms, etc.— the neurologists diagnosed me with an autoimmune disorder called Guillain-Barré Syndrome."
To learn more about GBS and its effects, we spoke with Christyn Edmundson, M.D., director of neuromuscular medicine at the Swedish Neuroscience Institute.
What is Guillain-Barré Syndrome?
It’s a group of acute—meaning rapid onset—neuropathies. In patients with GBS, the immune system attacks the body’s peripheral nerves, which are the nerves in the arms and legs. It can attack the lining of the nerve, which is called myelin, or the nerve itself. It has been around a long time, but because of modern electrodiagnostics and things like antibody tests and spinal taps, we are able to more clearly define GBS. If someone had it 200 years ago, all they might have known is that their arms and legs are tingly, numb and weak, which could have been for any number of reasons, such as polio or multiple sclerosis. There are several types, but the most common is acute inflammatory demyelinating polyneuropathy. Demyelination refers to the cover of the nerve that is attacked. It’s like the coating on the outside of a wire. There are subtypes in which the actual nerve is attacked; it’s like the wire has actually been cut and the nerve must regrow. Those are harder to recover from. GBS is neither contagious nor genetic.
What are the symptoms associated with GBS?
I would say the most common way it presents is with relatively rapid onset of numbness and weakness. This might look like a sort of tingling and weakness in the hands and feet that can spread up into the legs, arms, torso and even the muscles associated with functions like breathing and swallowing. In some cases, it affects the muscles controlling the eyes and face.
Patients usually experience worsening of the symptoms over a matter of days from the onset, with 90% of patients reaching the nadir or worst point within 4 weeks of initial onset, so it happens fairly quickly that people reach the worst point, then they improve from there. If someone continues to get worse and worse for many weeks, it’s no longer considered GBS.
How is GBS diagnosed?
The physical exam is a large part of diagnosing GBS, so it’s very important to see your doctor if you are experiencing these symptoms. Many people will undergo a spinal tap or lumbar puncture, where we look for high protein in the spinal fluid, but an absence of inflammatory cells. That helps us differentiate it from, say, polio which would show really high inflammatory cells. A lot of people also undergo something called an electromyography (EMG) and nerve conduction study; that can help show the signs of the particular type of nerve injury we see with GBS. There can also be certain types of antibodies associated with types of GBS, although not all people with GBS have them.
How is GBS treated?
There are actually some subtypes that do well without treatment. Treatment depends very much on symptoms and timing. GBS is an autoimmune disease in which a patient’s antibodies are attacking the nerves, so for someone in the first four weeks who is not walking we treat it with intravenous immunoglobulin (IVIG) therapy or plasmapheresis. With IVIG, antibodies are collected from blood donors. It works by tricking the body into breaking down its own antibodies [which are attacking the nerves]. With plasmapheresis, the blood is basically pumped outside the body and the antibodies are filtered out. If a person has already started to improve on their own, they may not benefit from these treatments. But in some cases, GBS spreads to respiratory muscles, so some of those patients will require intubation to get ventilation to protect their airway, because they can’t swallow safely or even swallow. For other types or if a person has already started to improve on their own, they may not benefit from these treatments. Sometimes patients will improve on their own over time; it’s what we call “the tincture of time”.
Is GBS associated with vaccinations?
I am so glad you asked that question! It’s really misunderstood and in the public discussion a lot. If you’ve ever gotten a flu shot, they ask if you have had GBS. That’s an artifact from an out-of-date understanding of GBS and vaccination. More modern large-scale analyses show that vaccines at most result in GBS in two cases per million vaccine doses, so it’s a very, very tiny number. And other analyses suggest no correlation at all. Millions of us get vaccinated every year and just by random chance some proportion will wind up getting GBS, regardless of whether they got a vaccination or not. GBS should not exclude anyone from getting vaccines. In fact, infection is a bigger risk factor for GBS, so by getting your flu shot you are actually protecting yourself from the flu, which is much more likely to cause GBS than the vaccination.
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This information is not intended as a substitute for professional medical care. Always follow your health care professional’s instructions.