How serious is it?
You’ve noticed that your toes and ankles have had this weird prickling sensation for the past few days. This morning, you realized that your legs felt weak, and it continues to worsen throughout the day. You go to the doctor, and he suspects you might have Guillain-Barré syndrome. What is this? Should you be concerned? How is it treated?
Guillain-Barré syndrome is a rare condition where your immune system attacks your nerves, resulting in them becoming damaged and preventing them from transmitting signals properly. While the exact cause isn’t known, the disorder usually appears within a few days or weeks after a respiratory or digestive tract infection. Most commonly, infection with campylobacter, a type of bacteria often found in undercooked poultry, is the culprit. Other possible causes are the influenza virus, cytomegalovirus, Epstein-Barr virus, Zika virus, Hepatitis A, B, C, and E, HIV, Mycoplasma pneumonia, and Covid-19 virus. Recent surgery, trauma, or vaccination have triggered the illness in rare cases.
Guillain-Barré syndrome usually starts with tingling and weakness in your feet and legs and spreads to your upper body and arms. In about 10% of people with the disorder, symptoms begin in the arms or face. As the condition progresses, muscle weakness can evolve into paralysis. Other symptoms are prickling/pins and needles sensations in your fingers/toes/ankles/wrists, unsteady walking, inability to walk or climb stairs, difficulty with facial movements (ex. speaking, chewing, or swallowing), double vision or inability to move eyes, severe pain that may feel achy, shooting or cramp-like, pain may be worse at night, difficulty with bladder control or bowel function, rapid heart rate, low or high blood pressure, and difficulty breathing. Once symptoms appear, they tend to worsen during the first two weeks. The disorder can affect a person of any age, but your chances of developing it increase as you age. Also, it’s more common in men.
There are several types of Guillain-Barré syndrome. The most common variation in the United States is acute inflammatory demyelinating polyradiculoneuropathy (AIDP). With AIDP, muscle weakness starts in the lower part of your body and spreads upward. Another type, Miller Fisher syndrome (MFS), is where paralysis begins in the eyes and is associated with an unsteady gait. MFS is more common in Asia. Acute motor axonal neuropathy (AMAN) and acute motor-sensory axonal neuropathy (AMSAN) are two other types and are more frequent in China, Japan, and Mexico.
Since your nerves control movement and body functions, individuals with Guillain-Barré syndrome are at risk for numerous complications. If the weakness or paralysis spreads to the muscles that control your breathing, it could be fatal. Close to 22% of people with Guillain-Barré syndrome need temporary help from a machine to breathe. While most people recover completely, others have minor residual weakness, numbness, or tingling. Unfortunately, blood pressure fluctuations and irregular heart rhythms (cardiac arrhythmias) are common. About one-third of people with the syndrome have severe nerve pain. Also, sluggish bowel function and urine retention are common. Since people are hospitalized and immobile during the initial phase of the disorder, they’re at risk of developing blood clots and pressure sores. Somewhere from 2% to 5% of people with Guillain-Barré syndrome experience a relapse.
There’s no cure for Guillain-Barré syndrome. The goal is to identify the condition early so treatment can be started as soon as possible. The issue is that it can be challenging to diagnose in its initial stages. Besides a thorough medical history and physical exam, the doctor will recommend a lumbar puncture (spinal tap) to withdraw a small amount of fluid from the spinal canal in your lower back and test it for a specific change that commonly occurs in those with the condition.
Once a diagnosis has been made, there are two main treatment options to choose from that are equally effective. Plasmapheresis is when the liquid portion of your blood (plasma) is removed and separated from your blood cells. The blood cells are then put back into your body, which manufactures more plasma to make up for what was removed. The process is thought to work by ridding plasma of specific antibodies that contribute to the immune system’s attack on the peripheral nerves. Immunoglobulin therapy involves taking immunoglobulin with healthy antibodies from blood donors and giving it to the affected individual through an IV (intravenously). High doses of immunoglobulin can block the damaging antibodies that may contribute to the syndrome.
You’ll also be given medication for pain and to prevent blood clots. In addition, you’ll need some form of physical help before and during recovery. To help your muscles stay flexible and as strong as possible, your caregivers will move your arms and legs during the period when you’re too weak to do this yourself. During recovery, physical therapy is used to help you deal with fatigue and regain strength and proper movement. You’ll also learn self-care skills and might need to use adaptive devices, like a wheelchair or braces, for a while. It’s vital to have a strong support system, become involved in a support group, and talk about any feelings or concerns you have with a counselor.
It’s key to point out that the general timeline of the disorder is that after the first symptoms appear, they’ll get progressively worse during the first two weeks before reaching a plateau at four weeks. At this point, recovery begins and usually lasts 6 – 12 months, but it can last up to three years. For adults recovering from Guillain-Barré syndrome, about 80% can walk independently six months after diagnosis, and close to 60% fully recover motor strength one year after diagnosis. Unfortunately, about 5% to 10% have delayed and incomplete recovery. Thankfully, children rarely develop Guillain-Barré syndrome, and if they do, they generally recover more completely than adults.
Given the exact cause of Guillain-Barré syndrome isn’t known, there isn’t a specific way to prevent it. The best thing you can do is reduce your chances of developing any infection. The easiest way to do this is by washing your hands frequently and thoroughly using the proper technique. You should wash your hands for at least 20 seconds using soap and water. Make sure you’re scrubbing all parts of your hands, including the backs of your hands and your thumbs. It’s also vital to keep your body healthy by getting plenty of exercise, eating a nutritious diet, and getting adequate quality sleep each night.
Guillain-Barré syndrome can be scary to experience. However, with the proper treatment started quickly, you can make a full recovery. If you have any questions or concerns about Guillain-Barre syndrome, please speak with your doctor. If you would like more information, please visit the National Institute of Neurological Disorders and Stroke’s Guillain-Barré Syndrome page at https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Guillain-Barr%C3%A9-Syndrome-Fact-Sheet