Ask the doctors: Guillain-Barre syndrome is a rare, painful autoimmune disease

Dear Doctor: My brother-in-law thought he had the flu, but it turned out to be Guillain-Barre syndrome. He’s now in his fifth month of an intense recovery. What can you tell me about the disease?

Dear Reader: Guillain-Barre syndrome is a rare disorder that affects about 1 in 100,000 people each year. It’s an autoimmune disease, which means the immune system goes a bit haywire. It mistakes cells within your body as threatening invaders and sets out to destroy them. In Guillain-Barre, the immune system attacks the peripheral nervous system, which encompasses all of the nerves in the body other than the brain and spinal cord. Infection with certain viruses and bacteria is a known trigger of Guillain-Barre, and is responsible for up to two-thirds of all cases.

Damage to the nerves results in weakness and exhaustion, often accompanied by tingling or pinprick sensations in the extremities. In the early stages of Guillain-Barre, people experience a loss of coordination that can impair balance, movement, speech, swallowing, vision and bladder control. These initial symptoms, along with possible abnormal blood pressure, both high and low, evolve over the course of the first few weeks. Progressive muscle weakness affects both sides of the body and occurs rapidly, often within hours or days. Severe cases of Guillain-Barre syndrome affect the patient’s ability to breathe and result in near-complete paralysis.

Diagnosis relies largely on a person’s symptoms. However, blood tests to measure red blood cells, white blood cells, platelets and hemoglobin, and metabolic panels to determine levels of electrolytes, blood sugar, total proteins and metabolic waste products, may be used to rule out other conditions. Guillain-Barre can cause certain changes to spinal fluid, so a lumbar puncture, also known as a spinal tap, may be ordered. Tests to measure nerve function can also be useful.

There is no known cure, so treatment consists of addressing existing symptoms, which is known as supportive care. This includes blood therapies such as plasma exchange, or plasmapheresis, which “cleans” the blood, or immunoglobulin therapy, which uses antibodies to try to calm the immune system. Patients often experience significant pain, which can be eased with medication. Since prolonged inactivity can lead to blood clots, compression garments and blood thinners are prescribed often. In serious cases, when swallowing or breathing are compromised, a feeding tube or a ventilator may be needed.

Most patients recover completely. However, as in the case of your brother-in-law, it’s often a gradual process. A lucky few are up and about in just a few months, but the majority of patients take about a year to fully recuperate. It’s also possible for recovery to take several years, and for patients to experience ongoing neurological issues.

Rehabilitative care includes physical, speech and occupational therapy. It can be a tough road back to good health, and many patients and their caregivers find a support group to be helpful. You can find more information at the Guillain-Barre Syndrome Foundation’s web site at gbs-cidp.org.