Guillain-Barré & Associated Inflammatory Neuropathies

Support and information for people affected by Guillain-Barré syndrome (GBS), CIDP & associated inflammatory neuropathies www. gaincharity.org. uk

Registered Charity 1154843 & SCO39900
Welcome to the official Guillain-Barré & Associated Inflammatory Neuropathies (GAIN) Facebook page.
THE FACTS
Acute
Guillain-Barré syndrome (GBS) and other variants
GBS, also known as Acute Inflammatory Demyelinating Poly(radiculo)neuropathy, is an acute disease of the peripheral nervous system in which the nerves in the arms and legs become inflamed and stop working. This causes sudden weakness leading to limb paralysis, and a loss of sensation, sometimes with pain.
Other associated acute variants include AMAN, AMSAN, Miller Fisher

Chronic
Chronic Inflammatory Demyelinating Poly(radiculo)neuropathy (CIDP) and other variants
CIDP, once known as chronic GBS is a similar but longer lasting illness and regarded as a related condition.
Other associated chronic variants include CIAP, Lewis Sumner (MADSAM), Multifocal Motor Neuropathy (MMNCB), Paraprotein Demyelinating Neuropathy

Who does this affect?
Anyone: young or old, male or female. The illnesses are neither hereditary nor contagious.

Causes
This is a matter of much research. It is not really known however about 60% of people have suffered a viral or intestinal infection in the previous two weeks. These infections trigger an incorrect response in the immune system which attacks the nerves.

Symptoms
Usually it starts with tingling and numbness in the fingers and toes with progressive weakness in the arms and legs during the next few days. In the mildest of cases, the weakness may arrest and cause only moderate difficulty in walking, requiring sticks, crutches or a walking frame.
In some cases the weakness progresses and leads to complete paralysis of the legs, and may affect the arms as well.
In about 25% of cases the paralysis progresses up the chest and the patient is unable to breathe on their own and needs to rely on a mechanical breathing machine (ventilator).
The throat and face may be affected making swallowing impossible and the patient will require a tube into the nose or directly into the stomach to enable them to be fed.

Diagnosis
Diagnosis is made from patient history and clinical examination, although this is not always conclusive as symptoms can be confused with other conditions. There are two helpful tests which are performed in most instances.
• Lumbar puncture, where under local anaesthetic a small amount of spinal fluid is taken for analysis;
• Electromyogram (EMG), which records nerve conduction and muscle activity.

Treatment for GBS
GBS improves spontaneously, however there are certain factors that can assist recovery:
• Good nursing and medical care;
• Immunoglobulin infusion or plasmaphersis exchange in first few days;
• Rehabilitation such as physiotherapy and hydrotherapy

Treatment for CIDP
Like GBS, CIDP can improve without treatment. However recovery may be slow and illness can either get progressively better or worse or can follow a relapsing /remitting course.
Most patients are given treatment in the forms of immunoglobulin, Plasmapheresis or corticosteroids. Other drugs may be used in some cases.

Recovery
Most patients (80% ) make a full recovery but many spend three months or more in hospital and a year or more to recover. A small percentage may be left with residual weakness, numbness or pain. Sadly some will never be able to resume their former life and in GBS death can occur in around 5 - 8% of cases, although highly unlikely in cases of CIDP. Uncommonly, GBS can recur or turn into CIDP

GAIN supports all those affected by GBS, CIDP and associated inflammatory neuropathies within the United Kingdom and the Republic of Ireland.
If you are affected in any way, you can register for support and /or become a ‘Friend’ of the Charity for free. We will send you literature, our newsletters, and details of what’s going on. We can even organise a visit at hospital or at home.
If you would like to help GAIN, perhaps by making a donation or becoming a ‘member’ of the Charity, then you can do that by following the links on the main website.