Guillain-barre Syndrome

What is Guillain-Barre syndrome?

Guillain-Barre (ge-YA bah-RAY) syndrome, or GBS, is a disease that affects the nerves in your body. Nerves carry messages from the brain that tell your body many things, such as when and how to move. Nerves also tell the brain what is felt when you touch something. With Guillain-Barre there is nerve inflammation (in-flah-MAY-shun), which means that the nerves become swollen and irritated. This nerve damage may block messages to your brain, which can make it hard for you to move or to feel things. The disease usually goes away in a few weeks or months, but it may take longer.

What causes Guillain-Barre syndrome?

It is not known for sure what causes GBS. Often people get GBS after having a minor infection, such as a cold or the stomach flu. Sometimes the disease happens after a vaccination (vak-si-NAY-shun) or surgery. These things may trigger your body to attack itself by mistake. You cannot catch GBS by being around someone who has it.

What are the signs and symptoms of Guillain-Barre syndrome?

• Usual symptoms: With GBS, the illness may go through three phases. The symptoms begin very quickly during the first phase, which lasts a few weeks. During the second or "plateau" phase, there may not be any changes in your symptoms. Your symptoms slowly go away during the recovery phase, which usually lasts a few months or longer. With GBS, you may have one or more of the following symptoms:
  
  
  • Loss of feeling in parts of your body, or feeling "pins and needles".
    
    
  • Muscle weakness, pain, and cramps.
    
    
  • Trouble moving certain parts of your body. Movement problems may start in your feet and legs, and move to your arms and head. You may also have trouble moving your face muscles.
    
    
  • Trouble controlling your urine or bowel movements (BM's).
    
    
  • Constipation (kon-sti-PAY-shun), which is problems having a BM. You may have hard, dry stools that are difficult to pass, or have less BMs than usual.
    
    
  • Blurred vision.
    
    
  • Dizziness.
    
    
  • Heart palpitations (noticing your heart pounding or missed heartbeats).
  
  
• Serious symptoms: If you have any of the following symptoms, call 911 or 0 (operator) for an ambulance to get to the nearest hospital or clinic. Do not drive yourself!
  
  
  • You have new drooling or trouble swallowing.
    
    
  • You faint (pass out), feel like fainting, or have new problems with thinking clearly.
    
    
  • Your lips or fingernails turn dusky, pale, or blue.
    
    
  • You find it very hard to breathe.
    
    
  • You suddenly become unable to move a certain part of your body, and this is a new problem.

What may be done to treat Guillain-Barre syndrome?

There is no cure for GBS. Treatment may help decrease some symptoms and prevent other health problems that GBS may cause. You may be put in the hospital so caregivers can watch you closely and do tests. Tests may include blood tests, a lumbar puncture, a chest x-ray, and neuro (NOOR-oh) signs. You may need medicine or treatment to decrease the number of antibodies (AN-te-bod-ees) in your blood. If you are having trouble breathing, you may need to have a machine help you breathe. Other care will depend on your symptoms. Some of the medicines you may need to treat GBS or the problems it causes include the following:

• Antibiotics: This medicine is given to fight or prevent an infection caused by bacteria. Always take your antibiotics exactly as ordered by your primary healthcare provider. Do not stop taking your medicine unless directed by your primary healthcare provider. Never save antibiotics or take leftover antibiotics that were given to you for another illness.
  
  
• Blood thinners: Being immobile (unable to move around as much as usual) may increase your risk of blood clots. Blood thinners are medicines that help prevent clots from forming in the blood. Clots can cause strokes, heart attacks, and death. Blood thinners may cause you to bleed or bruise more easily. Do the following things if you are taking a blood thinner.
  
  
  • Watch for bleeding from your gums and nose, and for blood in your urine or BM's.
    
    
  • Use a soft washcloth on your skin and a soft toothbrush to brush your teeth. Doing this can keep your skin and gums from bleeding.
    
    
  • Tell your dentist and any other caregivers that you take blood thinning medicine.
    
    
  • Wear a MedicAlert bracelet or necklace that says you are taking a blood thinner medicine. You may get one from your local drugstore, or contact:
    • MedicAlert Foundation
      2323 Colorado Avenue
      Turlock , CA 95382
      Phone: 1- 888 - 633-4298
      Web Address: http://www.medicalert.org
      
  
  
• Heart medicine: This medicine may be given to help your heart beat more regularly.
  
  
• Immune globulins: Immune globulins (GLOB-u-lins) can help decrease antibodies (AN-te-bod-ees) in your blood. Antibodies are part of your immune system. When antibodies are working right, they help to protect your body from things that may cause illness (such as germs). With GBS, antibodies may attack parts of your own body when they should not.
  
  
• Plasmapheresis: Plasmapheresis (plaz-mah-fe-REE-sis) removes antibodies (AN-te-bod-ees) from your blood. A special IV is placed in your vein and blood is removed through it. The blood is then put in a special machine that spins and separates the red blood cells from the antibodies. The cleaned blood is then put back in your body through the IV.
  
  
• Plasma exchange: A process where a part of the blood called plasma is removed and replaced with other fluids.
  
  
• Pain medicine: You may need medicine to take away or decrease pain.
  
  
  • Learn how to take your medicine. Ask what medicine and how much you should take. Be sure you know how, when, and how often to take it.
    
    
  • Do not wait until the pain is severe before you take your medicine. Tell caregivers if your pain does not decrease.
    
    
  • Pain medicine can make you dizzy or sleepy. Prevent falls by calling someone when you get out of bed or if you need help.
  
  
• Sedative-Hypnotics (SED-ah-tiv hip-NOT-IKS): This medicine may be given if GBS causes you to feel anxious. It may also make you sleep better at night. Sometimes this medicine may cause you to feel sleepy the next day.
  
  
• Stool softeners: You may be given stool softeners to keep you from getting constipated. Stool softeners make your BM softer so you do not need to strain when having a BM.

Risks:

You may have other health problems because of your GBS. These include breathing problems, and a higher risk for choking and blood clots. With treatment, the chances of having long-term problems are small. You may still have mild weakness, even after you have recovered from GBS. Without treatment, Guillain-Barre may cause death. Call your caregiver if you are worried or have questions about your medicine or care.

Where can I go for support?

You may feel scared, confused, and anxious because you have GBS. These feelings are normal. Talk about your feelings with your caregiver or with someone close to you. For more information about GBS, contact:

• Guillain-Barré Syndrome Foundation International
  P.O. Box 262
  Wynnewood , PA 19096
  Phone: 1- 610 - 667-0131
  Web Address: http://www.guillain-barre.com
  

Care Agreement

You have the right to help plan your care. Learn about your health condition and how it may be treated. Discuss treatment options with your caregivers to decide what care you want to receive. You always have the right to refuse treatment.

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The above information is an educational aid only. It is not intended as medical advice for individual conditions or treatments. Talk to your doctor, nurse or pharmacist before following any medical regimen to see if it is safe and effective for you.

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