Guillain-Barre syndrome is a rare illness where your body’s defense system attacks its own nerves. While serious, many people fully recover.
What is Guillain-Barre syndrome?
Guillain-Barré syndrome (GBS) is a rare condition where your body’s immune system attacks the peripheral nerves (the nerves connecting the brain and spinal cord to the rest of the body). While symptoms can progress rapidly, leading to life-threatening circumstances, many patients who seek GBS treatment experience a full recovery.
AHN Neuromuscular Program
The AHN Neuromuscular Program is a specialized program that focuses on diagnosing and treating diseases affecting the nerves and muscles. We offer a comprehensive and thoughtful approach to care for patients experiencing a wide range of neuromuscular conditions.
Why choose AHN for your Guillain-Barre syndrome
Our skilled neuromuscular specialists are highly experienced in diagnosing and treating Guillain-Barre syndrome and the comprehensive diagnosis and effective treatments provided offer the best chance of a full recovery. The AHN Neuromuscular Program offers patients:
- Expert GBS diagnosis and GBS treatment: A team of highly skilled neurologists, neurophysiologists, and other specialists who are experts in neuromuscular disorders.
- Advanced diagnostic tools: Access to state-of-the-art diagnostic testing, including electromyography (EMG), nerve conduction studies (NCS), muscle biopsies, and genetic testing, to accurately identify the specific neuromuscular condition.
- Personalized treatment plans: Development of individualized treatment plans tailored to each patient's specific needs, which may include medication, physical therapy, occupational therapy, speech therapy, and other supportive care.
- Multidisciplinary care: Collaboration among various specialists — such as physical therapists, occupational therapists, speech therapists, pain management specialists, and genetic counselors — address all aspects of a patient's condition.
- Research and clinical trials: Opportunities for patients to participate in cutting-edge research and clinical trials, providing access to new and emerging GBS treatments.
- Support services: Access to resources and support groups to help patients and their families cope with the challenges of living with a neuromuscular disorder.
The AHN Neuromuscular Program aims to provide comprehensive, patient-centered care for individuals with complex neuromuscular conditions, helping them manage their symptoms, improve their quality of life, and maintain as much independence as possible.
Guillain-Barre syndrome symptoms and signs
Symptoms of Guillain-Barre syndrome (GBS) range from mild to severe. Because severe symptoms can be a medical emergency, call your physician immediately if you suspect you have GBS. Common GBS symptoms include:
- Weakness or tingling sensations in the legs
- Weakness that spreads to the arms and upper body
- Problems walking or balancing
- Problems breathing
- Rapid or abnormal heart rate
GBS causes and risk factors
The exact cause of GBS isn't fully understood, but it's generally triggered by an infection. The immune system, while fighting off the infection, sometimes gets confused and starts attacking the myelin sheath (the protective coating around nerve fibers) or the nerve fibers themselves.
The most common triggers include:
- Stomach bugs: The most frequent trigger is a type of food poisoning called Campylobacter jejuni. About one out of three people who get GBS had this kind of stomach infection recently.
- Cold and flu viruses: Like the regular flu virus, or viruses that cause mononucleosis (Epstein-Barr) or milder infections (Cytomegalovirus).
- Other germs: Including the germ that causes a type of lung infection called Mycoplasma pneumonia, and viruses like Zika or even COVID-19.
- Surgery or injury (uncommon): Sometimes, GBS can start after a surgery or a physical injury.
- Vaccines (very rare): In very few cases, GBS has been linked to certain vaccines, like the flu shot. However, getting the flu itself makes you much more likely to get GBS than getting the flu shot does — vaccines save lives.
It's important to remember that GBS is very rare. It’s not contagious and cannot be passed from person to person. It's an immune system reaction within an individual. While anyone can develop GBS, certain factors might slightly increase the risk. GBS causes can include:
- Recent illness: As mentioned above, a recent infection (especially Campylobacter jejuni) is the most significant risk factor.
- Age: While GBS can occur at any age, it tends to be more common in adults and older adults.
- Sex: Those assigned male at birth are slightly more likely to develop GBS.
- Certain medical conditions (very uncommon): In extremely rare instances, GBS has been associated with conditions like Hodgkin's lymphoma or lupus, but these links are not well-established for the general population.
Guillain-Barre syndrome screening and diagnosis
We will perform a complete neurological examination and discuss your symptoms. Because symptoms of Guillain-Barre (GBS) can mimic those of other nervous system problems, we may order one or more of these tests in order to get an accurate GBS diagnosis.
Electromyogram (EMG)
This test measures the electrical activity of muscles. Think of it like listening to the electrical signals your brain sends to make your muscles move. If those signals aren't reaching the muscles properly, or if the muscles themselves aren't responding as they should, the EMG can detect those changes. This helps doctors understand if your muscle weakness or other symptoms are due to a problem with the nerves that control your muscles, or with the muscles themselves.
Nerve conduction studies
A nerve conduction velocity test measures the nerves’ ability to send electrical signals. We often perform it along with an EMG to help determine whether symptoms are related to your nerves or muscles. During this test, small electrodes are placed on your skin over your nerves. A tiny, safe electrical pulse is delivered, and the speed and strength of the signal traveling along the nerve are measured. Healthy nerves transmit these signals quickly and strongly. In conditions like Guillain-Barre syndrome, the nerves can be damaged, causing these signals to slow down or weaken. Comparing these results with the EMG helps pinpoint if the issue is primarily with the nerve's ability to transmit messages or with the muscle's response.
Lumbar puncture
This test, also called a spinal tap, evaluates the fluid surrounding your brain and spinal cord. We insert a needle into your lumbar area (small of your back) to remove the fluid. This fluid, called cerebrospinal fluid (CSF), acts as a protective cushion for your brain and spinal cord. In people with Guillain-Barre syndrome, the CSF often shows specific changes, such as an elevated protein level without a corresponding increase in white blood cells. Analyzing this fluid helps doctors confirm the diagnosis and rule out other conditions that might cause similar symptoms.
Types and stages of Guillain-Barre syndrome
GBS isn't always the same for everyone. While GBS is recognized globally, there are different variants (types) or subtypes found in different parts of the world. This geographic variation is due to a few key factors including the initial infection, the autoimmune response, and the regional epidemiology (the science of public health). Understanding the different types can help you navigate your diagnosis.
Acute inflammatory demyelinating polyneuropathy (AIDP)
This is the most common kind of GBS in places like America and Europe. With AIDP, your body's defense system attacks the outside covering of your nerves. Think of it like the plastic coating around an electrical wire. When this coating gets damaged, the messages trying to travel along your nerves slow down or stop. This usually causes weak muscles, numbness, and tingling.
Acute motor axonal neuropathy (AMAN)
Most commonly experienced in Asia, the body's defense system attacks the nerve itself, not just the covering. This often leads to very weak muscles, but you might not feel as much numbness or tingling.
Acute motor-sensory axonal neuropathy (AMSAN)
This is similar to AMAN, but it's often more serious. Your body attacks both the nerves that help you move and the nerves that help you feel things. This can cause severe and long-lasting weakness and problems with feeling.
Miller Fisher syndrome (MFS)
This is a rare type of GBS. People with MFS usually have three main problems:
- Balance issues: They might have trouble walking straight or feel wobbly.
- No reflexes: Their body's quick reactions, like kicking a leg when tapped at the knee, might be gone.
- Eye problems: Their eye muscles might not work right, causing blurry or double vision. People with MFS usually don't have as much arm and leg weakness as with other types of GBS.
Guillain-Barre syndrome treatment
A diagnosis of Guillain-Barre syndrome (GBS) can be daunting, but with the right care, many patients experience significant recovery and return to full, active lives. AHN neuromuscular experts are skilled in diagnosing this condition early, when it is easier to treat. We offer a comprehensive range of advanced therapies designed not only to lessen symptom severity and speed your recovery, but also to minimize disruption to your life. Many effective treatments are conveniently available as outpatient infusions.
In serious cases, patients may need to be hospitalized so we can closely monitor their care. In rare occurrences, a patient may require breathing assistance via a mechanical ventilator or other machines that help your body function until it recovers. If this is needed, our dedicated hospital teams are equipped to provide vigilant, around-the-clock monitoring and support.
GBS treatment options include:
- Plasmapheresis: This therapy, also called plasma exchange, filters your blood through a machine that removes harmful antibodies (similar to dialysis).
- Immunoglobulin therapy (IVIG): You receive an injection of high doses of good antibodies from healthy donor blood. These new antibodies help block the antibodies that may be attacking your nervous system.
Guillain-Barre syndrome FAQs
Navigating a Guillain-Barre syndrome (GBS) diagnosis can bring a lot of questions. It’s critical for patients and families to have helpful, trusted information that can be used to conduct productive conversations with your AHN care team. These FAQs cover many of our patients’ most frequently asked questions. We’re here to answer your other questions and help you feel more confident in your care plan.
What are the stages of Guillain-Barre syndrome?
Guillain-Barre syndrome (GBS) typically progresses through several stages. While the exact timeline and severity can vary greatly among individuals, the general pattern after a GBS diagnosis includes:
- Initial/acute phase: This is when symptoms first appear and worsen. It can last from a few days to several weeks. During this phase, muscle weakness, tingling, and numbness usually begin in the legs and can spread to the arms and upper body. Breathing and swallowing difficulties may also emerge.
- Plateau phase: After the initial worsening, symptoms stabilize and stop progressing. This phase can last for days, weeks, or sometimes even months. The severity of weakness and other symptoms at this stage is often a predictor of long-term recovery.
- Recovery phase: This is when symptoms begin to improve, and strength gradually returns. Recovery can be slow and may take anywhere from a few weeks to several years. Many individuals experience a significant recovery, but some may have residual weakness or other symptoms.
What are the warning signs of Guillain-Barre syndrome?
The warning signs of Guillain-Barre syndrome (GBS) often begin with a tingling sensation, weakness, or numbness, usually starting in the feet and legs and spreading upward. The primary GBS symptoms include:
- Tingling, numbness, and progressive weakness: This typically starts in the fingers, toes, ankles, or wrists, often feeling like "pins and needles," and can spread upwards, causing muscle weakness that may lead to difficulty walking, an unsteady gait, or even paralysis.
- Difficulty with facial movements: This can affect speaking, chewing, or swallowing.
- Severe pain: Often described as aching or cramping, and frequently worsens at night.
- Autonomic dysfunction: This can manifest as problems with bladder or bowel control, a rapid heart rate, or low blood pressure.
- Breathing difficulties: This is a serious symptom that requires immediate medical attention.
If you experience a rapid onset of these symptoms, especially progressive weakness, it's crucial to seek urgent medical evaluation.
Can a person recover from Guillain-Barre syndrome?
Yes, most people do recover from Guillain-Barre syndrome (GBS), though the extent and speed of recovery can vary widely. The majority of individuals regain the ability to walk and live independently. Recovery is often a slow process, sometimes taking months or even years. Factors influencing recovery include the severity of the initial illness, age, and promptness of treatment. Some individuals may experience lingering GBS symptoms such as mild weakness, fatigue, or sensory changes, while a smaller percentage may have more significant long-term disability. GBS treatment includes rehabilitation, including physical, occupational, and speech therapy, which plays a vital role in optimizing recovery.
What should you avoid with Guillain-Barre syndrome?
While there aren't specific foods or activities that directly cause GBS or worsen its acute progression once it's established, managing the condition and its recovery involves certain considerations. During the acute phase, avoiding anything that puts undue stress on your compromised muscles is crucial. This includes:
- Overexertion: Pushing yourself too hard can be detrimental during the acute and early recovery phases. Listen to your body and your medical team's advice regarding activity levels.
- Falls and injuries: Due to muscle weakness and balance issues, avoiding situations that could lead to falls is extremely important to prevent further complications.
- Skipping rehabilitation: Physical, occupational, and speech therapy are integral to recovery. Avoiding or neglecting these can slow down the regaining of strength and function.
- Ignoring new or worsening symptoms: Always communicate any changes in your condition or new symptoms to your healthcare provider promptly.
- Self-treating: Relying on unproven remedies or supplements without consulting your doctor can be dangerous.
Your AHN care team will provide personalized guidance on what to avoid and what activities are safe as you progress through different stages of the syndrome.
What is the long-term prognosis for Guillain-Barre syndrome?
The long-term prognosis for Guillain-Barre syndrome is generally good, with the majority of individuals making a substantial recovery. Around 70% of people fully recover. However, it's important to understand that full recovery can still mean some residual symptoms.
Potential long-term outcomes include:
- Residual weakness: Some individuals may experience persistent weakness, particularly in the feet or legs.
- Fatigue: Chronic fatigue is a common complaint even after physical strength returns.
- Numbness or tingling: Sensory changes can sometimes persist.
- Pain: Neuropathic pain or muscle aches can be a long-term issue for some.
- Relapses: A small percentage of people may experience a recurrence of GBS, known as Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), which requires ongoing treatment.
Consistent follow-up with neurologists, ongoing physical therapy, and lifestyle adjustments are often key to managing long-term effects and maximizing quality of life.
Contact us
To schedule an evaluation, call the location that's closest to you. For Pittsburgh and the surrounding areas, please call 412-359-8850. For the Erie region, please call 814-452-7575.