All about Guillain-Barré: Symptoms of the syndrome, their intensity and the way patients experience them.

The symptoms of Guillain-Barré Syndrome vary a great deal from patient to patient, and so each has a unique case history. Pain appears to be a common feature.
The symptoms usually appear after a preceding infection. They increase in intensity over a period of time, varying from a few hours in serious cases, to around 4 weeks in most patients. The symptoms vary, also with regard to the pattern in which they appear. Their distribution is usually symmetrical and double-sided. This means that the symptoms appear on both the left and right side of the body, but they may also appear randomly, especially in the beginning. They may appear for a short while, disappear for some days, and reappear shortly.

Three types of symptoms
Fever is not a symptom of GBS, but may be caused by the preceding infection that has triggered the syndrome. GBS symptoms vary, depending on whether the syndrome has affected the sensory nerve fibres (that transmit signals from a body area, to the brain and spine), or the motor nerve fibres (that transmit signals from the brain and spine to a body area). When both motor and sensory nerves are affected, the patient experiences a mixture of symptoms. Finally, the patient may also experience disruption in the working of the autonomous nervous system.

A - Sensory nerve fibres may be damaged
Sensory nerves tell us about our surroundings - whether we are hurt, if something is smooth or rough, hot or cold, etc.

Symptoms generally begin in the patient's feet, hands or face, spread to the legs or arms, and increase in intensity as they move towards the center of the body. They generally appear on both left and right sides of the body. However, GBS is unpredictable, and cases have been reported in which this "glove and stocking" pattern is not followed. Instead, motor symptoms or disruptions in the autonomous system may be observed. GBS may also affect an arm or a leg alone, without spreading to the rest of the body.

Gradually muscle pain is experienced in the large muscles, such as the thighs, back and shoulders. Pain in the lower back, buttocks or thighs is common, and is often the earliest symptom. Stiffness and cramping pain, or deep, aching muscle pain is common. The sensory symptoms then make themselves felt, as the sensory nerves are attacked. The patient experiences loss or reduction of the sense of touch, or abnormal sensations such as burning, tingling, pins and needles, 'ants under the skin', vibrations, numbness, etc.

In some patients, the skin develops hyperalgesia, or tenderness to touch exacerbated by bedsheets, socks and tight-fitting shoes; in some cases, pain may limit walking. Patients with symptoms limited to the feet and ankles may observe similar symptoms in the fingertips; as the symptoms extend to the knees, they may also extend to the wrists. Only rarely do these symptoms extend above the knees.
The patient loses the ability to tell the difference between hot and cold, and may feel cold or may sweat for no apparent reason. He or she may even get hurt without noticing. The patient's sense of taste can be affected too.

B - Motor nerve fibres may be damaged
The motor nerves control movement, and damage to them results in partially or completely blocked signals. The body area affected by the damaged nerve loses it's ability to function normally, resulting in reduced movement or coordination. The patient experiences this as a communication breakdown between what he wants to do and his ability to do it.

The patient's muscles weaken and atrophy. Tendon reflexes are reduced or lost. Progressive weakening or paralysis may occur, typically beginning in the feet, hands or face. It then spreads to the legs, arms and the rest of the body. Legs feel heavy, it gets difficult to stand up or climb stairs, to walk or stand. The patient may have difficulty holding and manipulating objects, such as buttons and toothbrushes. Arms feel weak and the patient can no longer lift heavy objects. The weakness may be accompanied by pain and muscle spasms. Constipation is also often a problem, due to the reduced activity of the intestines, change of diet, weakened stomach muscles that resist efforts by the patient to express the intestinal content.
About 28% of patients with the syndrome remain able to walk unaided.

In some cases, the face may be affected when damage occurs to the cranial nerves. These connect the brain to the muscles of the jaw, face and tongue, and also control the muscles that move the patient's head, neck and shoulders. As the paralysis progresses, all these areas may be paralysed. The eyelids or one side of the face may droop, the face loses it's ability to express feelings. The patient's voice may change because the vocal chords are affected. Speech may be unintelligible, because the various muscles required to form speech are weakened. Deafness is unusual but has been reported.

The progressive weakness affects patients with varying intensities, see below, and may be life-threatening.

C - Autonomic nerve system may be disrupted
The combination of pain, weakness and sensory disruptions are generally so alarming that the more discreet changes in the patient's autonomous nerve system may be overlooked. These may be just as serious, as detailed below.

The autonomous nerves control the inner organs, whose function is normally carried out automatically, such as secretion of hormones, vision, urination, breathing, heart beat, etc. These functions may be disrupted, resulting in arrhythmia, unstable blood pressure, blurred or double vision, dizziness, fainting spells, inability to regulate the body temperature, difficulty breathing, reduced ability to control the function of the stomach, digestive system and bladder, loss of weight, vomiting after meals, reduced function of various glands, incontinence, impotency, etc. It may be difficult to urinate, and the bladder may feel as it is not being emptied.

Symptoms show varying intensity
The few patients who experience a mild attack of GBS feel weak, may think they have a viral infection and perhaps experience a brief sensory reduction. They are not ill enough to seek a doctor, and as the illness disappears completely after a few days or weeks, they may be completely ignorant of the fact that they've just had GBS!

In moderate cases, the patient may partially or completely lose the ability to walk and carry out daily chores. This frightens the patient, who then seeks medical help after a while. The course of the syndrome is unpredictable, and the patient is generally hospitalised immediately for diagnosis, observation and treatment.

However, the majority of patients experience GBS as the frightening illness it is. Patients may be almost completely paralysed for a while. Patients with the hyper acute form of the syndrome lose the use of their legs within a day.

GBS can be more serious in certain parts of the body than in others, and even life-threatening. The progressive paralysis displays varying intensity: It can stop suddenly, causing partial paralysis, or may continue until the entire body is paralysed. If the paralysis affects the chest muscles, they are weakened or paralysed, affecting the patient's breathing and heart. Heart failure may occur due to strain.

In very serious cases, the entire body can be paralysed, even including the eye muscles. GBS can, very rarely, present with coma and absent brainstem reflexes. Such patients are NOT brain dead, their brains and sense of hearing and smell work perfectly well, and the patient is alert and conscious of what is going on around him or her. But he or she can literally not move a muscle in response.
Read more about communication with patients in this condition under 'Treatment'.

Acute hospitalisation may be necessary
GBS develops very quickly. 90% of the patients are seriously weakened during the first 3 weeks. If the paralysis affects the chest area, the patient may have difficulty speaking and swallowing, as well as bouts of irregular heartbeat and breathlessness.
This is why GBS patients are hospitalised immediately, in a neurology or intensive ward. The course of the syndrome is monitored intensely, to make sure no symptoms were overlooked. Patients showing signs of weakness are observed carefully for signs of impending life-threatening paralysis, such as paralysis of the throat, which signals a potential respiratory failure.

Difficulty breathing (dyspnoea), heavily reduced ability to breathe or even sudden respiratory failure may be experienced by about 20% of the patients, and is life-threatening. It is vital that the patient can be hooked up to a ventilator to stabilise breathing, should the need occur.
The heart rhythm and especially the blood pressure can also become extremely unstable, not least because of anxiety. The patient is therefore also hooked up to a heart monitor.

Symptoms to watch for
Typical symptoms that indicate sensory and/or motor nerves are affected:
- Muscle weakness or paralysis that begins in the feet or legs and gradually spreads to the arms and body, or vice-versa, from the arms and moving downward.
- Lack of coordination.
- Sensory disturbances, muscular pain.

Symptoms to be especially watchful for
Symptoms that indicate that the autonomous nerves are affected, and that vital body functions are affected:
- blurred vision
- difficulty moving the facial muscles
- dizziness
- irregular heart beat
If these symptoms are seen, contact a doctor as soon as possible.

Symptoms of possible life-threatening situations
- difficulty breathing, breathlessness, difficulty taking deep breaths
- drooling, difficulty swallowing
- fainting spells
If the patient experiences any of these symptoms, medical help should be sought immediately.

- Case histories
English and foreign-language case histories that inspire and support patients and their families. Many contain descriptions of symptoms that are not mentioned above. The case histories also illustrate the necessity of seeking qualified medical help immediately, if you suspect you may have Guillain-Barré syndrome.

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Jsmarcussen.com/gbs takes no responsibility for any errors, omissions or misinterpretations. These pages should be used for information only and you are strongly advised to seek professional help particular to your circumstances. For more information, please visit the website http://www.jsmarcussen.com/gbs or e-mail jsmarcussen@mail.tele.dk