Here are some answers to the most frequently asked questions concerning GFBS, CIDP and other variants.

In New Zealand most Health Insurance Policies will exclude cover for treating GBS and CIDP or related conditions with IVIg or Plasmapheresis as these fall into the excluded category of

“Renal dialysis or specialised transfusions of blood and blood products and derivatives”

Under “pre-existing conditions clauses most providers will expect a previous episode of GBS or CIDP to be declared.

In the case of travel insurance advice varies with some companies accepting that following recovery from GBS a re-occurrence is most unlikely whilst CIDP has an increase re-occurrence risk. Cover may be provided at an enhanced premium. It is always best to check the situation with your Insurance provider.

There is no research to support that GBS or CIDP is contagious or hereditary

It is very rare to have multiple episodes of GBS but it can happen and with the uncertainty surrounding the causes f GBS I there is technically nothing you can do to avoid a repeat episode

A condition in which the immune system attacks some components of the body. In GBS and CIDP the immune system attacks peripheral nerves

It is a bacterium that is one of the most common causes of gastroenteritis following food poisoning and is also one of the commonest infections that can trigger GBS

A form of treatment for GBS whereby the plasma portion of the blood is separated from the red and white blood cells and is discarded and is replaced with plasma from a blood donor.

A treatment given usually by a needle or a plastic cannula that is inserted into a vein usually in the arm for administering immunoglobulin( the proteins in blood containing antibodies) from a donor that, for reasons that are not entirely clear, neutralises the antimyelin antibodies in the patient and stops or slows down the autoimmune attack on the nerves.

GBS can follow certain types of vaccinations and there are a number of historical cases of “out breaks” recorded but such events are rare and no vaccines currently in use have been consistently associated with causing the onset of GBS. While there appear to be individuals who develop GBS after being vaccinated there does not appear to be an increased risk for the general population nor is there any risk that people who have had GBS will relapse if they are vaccinated. However, the situation is not so clear for CIDP patients as a vaccination may cause a relapse and a judgement should be made in conjunction with the patients GP to asses if the benefits of a vaccination clearly outweigh the risk of precipitating a relapse.

Having a Flu shot is generally recommended for patients that fulfil the standard criteria. The risk of complications from Flu is substantial (particularly for the older population) and that risk is markedly greater than the very small risk of developing GBS from a flu vaccination.

Pain is an integral part of GBS but sometimes it is overlooked in favour of trying to deal with the impact of the often severe paralysis overshadowing other features but it can be and should be treated. During the acute development phase of the syndrome a Nociceptive pain may occur. This type of pain is a protective warning that tissue damage is occurring. Typically in the back and buttocks it has an aching or cramping quality and may feel diffused and deep seated. Fortunately this type of pain is usually no more than a nuisance and can usually be treated with simple painkillers. If the pain becomes more severe then more advanced medication may be warranted.
Of a far more serious nature is Neuropathic pain that can occur during the recovery and rehabilitation stages of the disease arising from the damaged nerve fibres or the overuse of incompletely recovered muscles. Severe, disabling neuropathic pain is rare but many patients have persistent discomfort in their feet ranging from tingling, aching or tightness to sever stabbing or burning pain. It may be associated with marked sensitivity to touch so that even the light touch of the bed sheets is perceived as painful. Symptoms tend to worse at night disturbing sleep and adding to fatigue. The pain usually improves with time but some patients are left with annoying or even disabling pain that can persist for years or for the remainder of the patient’s life.
Treating neuropathic pain is difficult and it is almost impossible to give complete relief – often the best that can be achieved is to make it tolerable especially at night when it can disturb sleep. Depression can often be associated with this type of pain and managing mood disorders is a second goal of treatment. Neuropathic pain does not respond well to simple painkillers and often a cocktail of drugs is required – often arrived at by trial and error to find out which combination works best for that patient. There are many different drugs available to physicians and it will be a matter of judgement to see which are the most effective in any particular case. Often side effects from the use of these drugs occur and balancing pain reduction whilst maintaining a quality of life can be a difficult task.
Overuse Pain can arise in tendons, ligaments and joints as a result of overuse by those patients who still have residual weakness. Weak muscles around joints put strain on surrounding structures leading to chronic pain – usually a deep-seated aching within the limb. It is relieved by rest and usually does not disturb sleep. To relieve the pain anti-inflammatory drugs such as ibuprofen can be used but side effects such as indigestion or heartburn can be uncomfortable.