Chronic Inflammatory Demyelinating  Polyradiculoneuropath

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What Is GBS?
GBS is short for 'Guillain-Barrê syndrome' (pronounced Ghee-lan Bar-ray). It 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.

What is CIDP?
Some patients have a similar but longer-lasting illness called CIDP (chronic inflammatory demyelinating poly[radiculo]neuropathy). CIDP, once known as 'chronic GBS', is now usually regarded as a related condition.

Who can get GBS and CIDP?
Anyone: young or old, male or female. The illnesses are neither hereditary nor contagious. GBS affects about l50 people every year in the United Kingdom; the incidence of CIDP is perhaps one tenth that of GBS.

What causes GBS/CIDP?
This is a matter of much research. About sixty percent of patients suffer from a throat or intestinal infection, influenza or stress symptoms in the previous two weeks. These infections trigger an incorrect response in the immune system which attacks the nerves.

What are the symptoms?
First symptoms are usually 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, the arms may also be affected. In a quarter of cases the paralysis progresses up the chest and the patient is unable to breathe on his or her own and needs to rely on a mechanical breathing machine (ventilator). The throat and face may be affected making swallowing impossible and so the patient needs to be fed tube up the nose or directly into the stomach.

For CDP patients the illness follows a longer course but respiratory failure is highly unlikely.

How are GBS and CIDP diagnosed?
From the history and clinical examination. This is difficult because the symptoms may be confused with those of other conditions.

Two confrmatory tests may be helpful and are performed in most cases: lumbar puncture — under a local anaesthetic, a needle is inserted between the lower back bones and a small amount of spinal fluid is drawn off for analysis and elecromyogram (EMG) — an electrical recording of nerve conduction and muscle activity.

What is the treatment tor GBS?
GBS improves spontaneously. However certain factors can assist recovery:  good nursing and medical/intensive care; physiotherapy and hydrotherapy. therapies that relsove discomfort and prevent stiffness; plasmapheresis — the exchange of blood plasma generally reduces the duration of the disease in severe cases if carried out in the first few days; immunoglobin -- the infusion of immunoglobin proves successful with    similar results to plasmapheresis and counselling to reassure the patient and encourage the patient towards  recovery.

What is the treatment for CIDP?
Like GBS, CIDP can improve without treatment. However, recovery may be very slow and the illnesss can either get progressively better or worse, or can follow a relapsing/remitting course. Most patients are given treatment in the forms of plasmapheresis, immunoglobin or corticosteroids Other drugs may be used in difficult cases.

Do all patients recover?
Most patients (80%) make a total recovery but many spend three months or more in hospital and take a year to recover. Some patients do not recover completely and have residual weakness, numbness and occasional pain. A small number are unable to resume their normal occupation. Modern intensive care makes death from GBS a rare occurrence but is does occur in around 5% of cases, more commonly in the elderly. Death resulting from CIDP is highly unlikely. Uncommonly, GBS returns a second time or may turn into CIDP

What more can be done to help?
More research to help doctors diagnose and treat GBS/ClDP~more information for medical personnel and lay people improved counselling and support facilities for patients and their families.

Living with CIDP

Coping with uncertainty

CIDP may follow a pattern of relapses and remissions or a more gradual increase in symptoms. During a relapse new symptoms occur or old symptoms which had previously subsided may recur. Relapses can last for several months and may be relatively slight or quite severe. A remission occurs when the symptoms experienced during the relapse disappear either partially or completely over a period of time which may last weeks, months or even years.

CIDP does not always have these patterns of being 'better' or 'worse'; sometimes symptoms can gradually increase over a period of many years and it may be difficult to identify `better' or `worse' times.

It is impossible to predict with certainty how CIDP is going to affect an individual in the future. The pattern of relapses and remissions varies greatly from person to person. A period of relapse can be very disturbing but many people make a good recovery. Coping with this uncertainty is one of the most difficult aspects of 'living with CIDP'. You should try and accept this variability without getting too worried about it.

You and your family and friends

A diagnosis such as CIDP of a chronic condition with an uncertain prognosis, may well throw a strain on family and other relationships. You may find it difficult to accept help when you need it, or your family and friends may feel that they cannot give help or become overprotective toward you. It is difficult to carry on family life as if nothing has happened. Everyone concerned may have to take on new roles. If you and your family and friends are able to speak openly and honestly with each other you will probably find that you are able to help each other through difficult times with the result that the bonds are strengthened.

Instinctively children are aware that something is wrong and that you are worried. It is important that their questions are answered as and when they occur. Older children can become surprisingly mature and a source of strength. Trying to keep your problems to yourself will not spare them any anxiety.

You and your doctor

It is important to build a good relationship with your doctors, both internist and specialist. Because of the rarity of the illness, many doctors will not have encountered it before. The symptoms are difficult to describe and may not be taken seriously at first. Each case of CIDP is different, and relapses may bring new symptoms and problems. Because of the variability in severity and progression of the disease, the doctor will not be able to give you a definite prognosis.

 Each person responds in different ways to different treatments. I.V.I.G is the primary treatment modality period of experimentation with different treatment regimes is likely to be necessary in order to discover the regime which is most appropriate for you.

Attitude to life

It is important to be as positive as possible about everything. Our emotional state plays a large part in our health and although the norms of life may have to change for a while, the majority of patients with CIDP can expect a good quality of life.

Modification of ones lifestyle may be necessary but it is better to emphasize strengths, undertaking what can be achieved rather than failing to achieve the impossible. It is a natural reaction to become frustrated but the acceptance and understanding of the problem is more than half the battle.

Being positive can take a lot of effort, determination and even courage and can be helped by a similar attitude in those that support and help you.

What you can do to help yourself

You should follow a healthy a lifestyle. This will help to prevent other illnesses and infections which have been shown to trigger relapses.

A nutritionally balanced diet will ensure you are getting all the vitamins and minerals you require. There is no evidence of any special dietary requirements for CIDP sufferers. It is sensible to keep your weight down, since more weight is more difficult for weak legs to carry.

Regular exercise is important for overall health and should be taken according to individual limits and capabilities. Over exertion causes fatigue. However a little regular exercise will help to minimize muscle wastage and give you a good feeling of well-being. Any form of exercise that you enjoy and can comfortably follow will prove beneficial. Ask your physiotherapist to show you.

Adequate rest periods are essential to avoid fatigue. Stress and tension may irritate the symptoms of CIDP and therefore relaxation will allow you to unwind and `recharge'.

Where to get IVIG

  www.cidpusa.org/P/ivig.htm  g http://www.cidpusa.org/disease.html

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