All about Guillain-Barré syndrome: Recovery, future perspective and survival tips.

Majority of patients recover
Making a prognosis about recovery is impossible. Recovery begins as suddenly and inexplicably as when GBS symptoms appear. The symptoms disappear gradually, but may take weeks, months or years to do so. The course of the disease varies for each patient. Recovery takes 3-6 months for most patients, and about two-thirds of them recover completely.
As numbness, tingling and pain disappears, strength returns to the affected areas of the body, in the opposite order of succession as when the symptoms appeared. This means that in most cases, the arms and legs will regain their strength before the legs do, while right-handed patients may experience that strength returns to their left hand before their right, and vice-versa.

Top

Nerve cells are regenerated
Recovery from GBS is characterised by the immune system ceasing production of antibodies, and nerve damage being repaired.

Axonal damage is mended: the axon grows out slowly and is gradually enveloped by myelin. The myelin sheath can grow out in a few days, while it takes longer to repair a damaged axon. For example, motor nerves are regenerated at a speed of about 1 mm/day, so it can take months to repair a damaged nerve.
Demyelination is repaired by the regeneration of the myelin sheath. The speed of remyelination depends on the extent of the damage. The sheath consists of many layers that grow back gradually; it has to have a certain thickness before the nerve cell can regain its ability to transmit impulses. The sheath may sometimes never regain its normal thickness. As well, an increased number of Ranvier nodes may be created during the repair of nerve damage.

These factors reduce the nerve signal conduction speed indefinitely, after the patient has recovered from GBS. Research into the use of medicaments that speed up the growth of motor nerves is under way.

However, predicting which nerves will regenerate is impossible. Some researchers think that destroyed axons are not regenerated, and that the surrounding axons send branches out that take over the functions of the destroyed nerves, in the affected area of the body. The area functions again, and it seems as if the muscle has achieve full strength again, but the muscle has to work harder to carry out the same job and tires faster than normal.

Top

Statistics
Death can occur in up to 5% of the cases, usually due to cardiovascular or respiratory complications. Of the rest, 70% make an excellent recovery with no permanent damage, even after a severe attack of GBS. 20% are disabled and about 10% are severely disabled.
If comparing the statistics on GBS, you should remember to check the publication date of the material. The number of deaths due to GBS have fallen considerably in the last few years, due to improved treatments and improved patient monitoring to prevent cardiac arrests and respiratory distress, which are the two most frequent causes of death.

Top

Complete recovery?
Whether or not the patient will be slightly weak or have motor problems after recovery is individual. The majority of the patients recover completely, with full muscle strength, a year after recovery began.
The best outcome is seen when recovery begins within 2-3 weeks of the onset of symptoms. Increasing age, intense infection phase, need for a ventilator and major loss of motor coordination may lead to a less positive prognosis. Other factors influencing recovery include the duration of the treatment, the degree of paralysis, preceding diarrhoea, and signs of axonal damage.
Residual signs have been observed in patients with mild disease.

10-20% of the patients are still somewhat weak 3 years later, while 5-10% have severe permanent motor problems and may require a wheelchair to get around.

Although the majority of patients recover fully, most of them suffer from mild forms of weakness and/or sensory disturbances. They may experience periodic bouts of tingling and numbness in their fingers and toes, and days where their hands "don't work right" and they drop things. Very few patients require wheelchairs, and few have such severe problems that they cannot resume their jobs, unless they are physically very demanding.

These residual symptoms and their impact on the lives of post-GBS patients is not very well researched or documented, and many doctors may be at a loss to treat them.
This website is working to create a collection of resources based on real-life experiences. Patients suffering from residual symptoms as well as those who have successfully overcome them are encouraged to share them: See "Post-GBS residuals" for more information on increasing awareness and support.

'Pain: A part of life in the future' below deals with the issue of post-GBS pain. 'Case histories' and 'post-GBS residuals' contain valuable tips on how to tackle residual symptoms and experiences of continuing recovery many years after the initial attack.

Patients are urged to be mindful of the fact that because they have GBS, they are not immune to getting another illness simultaneously. If you experience new symptoms, or an unexpected worsening of the symptoms you have already, they may have a connection to the GBS or they may not. So please report them to both your doctor and your neurologist.

Top

Rehabilitation requires patience!
When GBS patients begin to recover, and the use of their muscles return, they need to retrain their muscles. Patients are shocked to discover how little they can do, after just a few weeks in bed. Physiotherapy acts on the muscles and does not affect the process of nerve healing.

Physiotherapist and occupational therapists teach the patient exercises to strengthen their muscles, use them correctly and increase their stamina. Patients who have lost their speech may require the services of a speech therapist.

The day paralysed patients can sit up is a big day. Other big days are when they can sit up without support, sit in a wheelchair, and walk with, and later without a walking aid, as their muscles are trained up again.
The intervals between these occasions can be long and frustrating, as the physiotherapy can be more demanding and take much longer than the patient realises - from 1½ month to over 1½ year, depending on the patient's condition.

Rehabilitation depends a great deal on the patient's psychological condition, also in the 'dead' periods where no progress seems to occur. To increase morale and motivate the patient, the physiotherapist can measure the slow increase in muscle stamina. Rehabilitation requires a great deal of time and patience from both the patient and health personnel.

Endurance can only be built up by perseverance. This is complicated by the fact that GBS/CIDP patients require a longer period of recovery between bouts of exercise.
Patients who find it hard to continue or to see progress may find it helpful to set themselves goals. For example, by starting off walking, then jogging, then riding a bicycle, etc. Start out at an easy pace, and once you get used to the concept and begin learning what your body is capable of, set your goals a bit further away.
As an example: if you can walk half a kilometer in 10 minutes, you could make your goal walking the same distance in 9½ minutes. When you achieve that, move your goal to 9 minutes a few days later. The idea being to improve your stamina gradually.

Remember that you require plenty of rest between bouts of exercise, perhaps even an interval so that you only exercise every second day to begin with.

Learn your limits
During rehabilitation, the patient is taught to use his limited energy constructively, by using his body correctly, avoiding unnecessary routines, and compensating for difficult activities by rethinking them and doing them another way.
Strength generally returns first to the arms, then to the hands, so the physiotherapist begins with arm and shoulder exercises. Banal things taken for granted before, such as holding a pencil and using it, have to relearned. Muscle strength is tested at intervals, and any weak muscles found then are trained and strengthened too, through specific exercises. As the muscles become stronger, the patient will feel less exhausted.

Patients learn to pace themselves, while under observation, and to exercise until they reach the limits of their endurance, without going over the limit. An important part of the physiotherapy is learning to recognise the body's signals and warnings when the limit is reached. These signals can include tingling, numbness or other sensory abnormalities within the muscle group. Pushing oneself over the limit can lead to pain, spasms, weakness and temporarily fatigued muscles - a kind of minor temporary relapse, during which rehabilitation must not be resumed until the muscles have recovered. Recovery from such a minor relapse can take hours, or even days, for patients under rehabilitation or who have recovered. That is why patients and ex-patients are advised to "Sit down before you Fall down!".

Patients learn their own limits, the need to rest as required and to interpret their body's signals and symptoms. Most patients learn their endurance limit and rest requirements by trial and error. Their daily lives often demand extra effort and concentration to carry out many everyday chores, and this is not always understood or appreciated by their surroundings.

Top

Exhaustion
Reduced muscle endurance or exhaustion is a problem, both during rehabilitation and after recovery. It continues to be a part of most ex-patients' lives for a while.

Trials show that up to about 80% of the patients who apparently achieve recovery and strive for a normal life still experience exhaustion or fatigue to a degree that affects their lives. In some cases, the exhaustion does not diminish over time. As with the tingling and pain, it can be necessary to learn to live with it, and live as normal a life as possible, with an increased awareness of the signals being sent from the patient's body.

If the patient feels chronically fatigued, a physical examination may reveal if their thyroid is a little slow, or if they suffer from anaemia, etc.

Top

Pain: Part of life in the future
Apart from the exhaustion, pain will be an issue for GBS ex-patients. 50-75% of the recovered patients complain about occasional pins and needles, pain and other vague sensory irregularities in their feet and legs.
The symptoms worsen in the evenings and nights, and are also experienced during days after they have been on their feet a lot. These problems can be experienced for many years after the first GBS attack. These persistent symptoms may influenced by the severity of axonal damage caused.

Normal pain medication does not usually work on these symptoms, therefore other medications are prescribed, to be taken daily. However, patients are often reluctant to take these medications for symptoms that appear occasionally.
The pain and numbness can confine the life of the recovered patient, and so rehabilitation also deals with the problem: The patient is taught to deal with these symptoms as much as possible, without giving up the possibility of leading a somewhat normal life.

Top

Other needs during recovery
As patients undergoes rehabilitation, other needs begin to make themselves noticed. These may include the desire to rethink their daily lives, homes, cars, interests, occupations, etc. Taking advantage of the aids and adjustments available may raise the patient's quality of life and help him or her lead as normal a life as possible.
For example, the patient may require a higher bed, a raised toilet, a wheelchair, driving lessons, new sports activities, advice on sex, etc.
As mentioned before, most patients recover, but may require a wheelchair for a while, during the recovery process. They may enjoy the use of a vehicle equipped for disabled drivers, they may require lessons in manoeuvering a wheelchair, and will need a special car sign to be able to use the disabled parking. Professional counseling should be sought if patients have issues such as self-esteem, impotency, etc.

The issues facing patients recovering from GBS/CIDP are seldom described and many patients may feel alone with their problems. Issues facing patients who have suffered from GBS, CIDP, MFS etc. are being discussed at this website, in turn. The discussions seek to bring together the experiences and knowledge ex-patients have, and share it with other patients, ex-patients and healthcare professionals. An example is 'What patients say about GBS & sexuality'.
Suggest issues and share your experience! Keep oriented on what issue is being discussed, see 'News' and 'News Archive', and sign up for the newsletter.

Top

Risk of relapses?
Relapses are thought to occur in upto about 3% of GBS patients, possibly as a result of certain infections. These relapses are unpredictable and have been reported in patients up to 36 years after the initial attack of GBS. The attack is usually considered a second condition, rather than a repeated attack - sort of like getting bronchitis twice.
Having had GBS neither reduces nor increases one's risk of a relapse. Neither does the severity of the first attack.

There are chronic forms of the disease, such as CIDP, in which relapses may be more frequent. About 10% of those diagnosed with GBS may have their diagnosis changed to CIDP. However, it is very difficult to tell whether a relapse is due to GBS eller CIDP, and researchers are working to find a test or marker that would help differentiate this.
Recurrence in MF is exceptional.

Doctors think that the risk of relapse during pregnancy, after recovering from GBS, is very small. Babies born of mothers who suffered GBS during their pregnancy appear to thrive normally, but nothing is known about whether or not nerve damage may show up later. No tests exist to suggest whether or not the patient's family is predisposed to GBS, or whether such a predisposition is inheritable.

Top

Are vaccinations a problem?
As mentioned earlier under 'Pathogenesis', GBS appears to occur after vaccinations in a very small number of people. But there is no proof of any connection that can lead to a prediction of GBS incidence among vaccinated individuals. Millions of people are vaccinated daily, but only a tiny fraction of these develop GBS.

It is unclear whether persons who have recovered from GBS should avoid vaccinations after their recovery, in order to avoid potential relapses. If the patient's case history reveals that a certain infection or vaccination triggered the relapse, the advice is usually to stay away from the vaccination. Besides, GBS patients are advised to refuse vaccinations for a year after recovery. Nerve healing is still in progress during this time, and the immune system can be very vulnerable.

If the patient requires a vaccination, he or she should consult his or her own physician, to weigh the pros and cons. Among the issues discussed are the consequences of avoiding the vaccination opposed to the risk of relapse. Is there a risk of severe complications if the patient avoids the vaccination and catches the infection? Your physician is the best person to consult in such a case, as he or she both has access to your case history and to the latest GBS research.
Other sources of information can be found under the 'Vaccinations' subsection of 'Links'.

Top

The future perspective
All over the world, neurologists, scientists, immunologists, virologists and pharmacologists are working together to prevent GBS and make improved treatments available.
Some study the immune system to find the reason behind the syndrome. Others study the nervous system to find out how attacks begin and end. Most cases appear to be triggered by a virus, and the theory that the virus changes the characteristics of the nerve cell or the immune system, is also being researched.
Some work on finding new treatments and improving on existing treatments. Others work on preventing GBS in the future....

There is a great need for standardisation of trials, as the results of present trials diverge a great deal, making results inconclusive and often contradictory.

Research and results are not very well publicised in the press - keep an eye on the 'Research' subsection of the 'Links' page, as well as on the 'News' pages of this website.

Patients and their families can increase awareness of this potentially catastrophic syndrome. For example, 1. May is celebrated all over USA as "GBS Awareness Day", and is marked by media coverage, symposiums, happenings, sponsored walks, etc. Awareness of the syndrome is increased and funds collected for research and for support-related activities.

Top

- Post-GBS
Focus onPost-GBS residual symptomer
Exclusive to this website: Patients write in about their residual symptoms and how they tackle them in their daily life.
Focus on GBS and intimacy issues
Exclusive to this website: Patients write in about intimacy issues that they experience following a bout of GBS.

- Disability products
SupportPlus
Support shoes, hose and footcare products as well as a range of other products

Disabled Dealer
New and pre-owned adaptive equipment and resources.
GTK Rehab
Aussie company offers seating and mobility solutions.
Gimp on the Go
Travelling with a disability? Ideas, tips and tons of information.
A helping hand

Wheel chairs, vans, public transportation, housing subsidy programs, SSI, state disability, state rehab, advocates, braces, hiring an attendant, etc.
Catalogcity
Over 90 catalogs with disability products. Search for Catalogs using the keyword disability, or search for specific products. The bottom of the homepage has links to international branches.
The Boulevard Website
A Directory of Products and Services for the Elderly, Physically Challenged, Caregivers and Healthcare Professionals.
Yahoo!
Check the Yahoo for your country, and search for disability products.
Amazon
Amazon's Medical Supplies section has catalogues for medical supplies which include some disability aids. Catalogues may be slightly out of date.

© Copyright 2001-2007 S. Marcussen. All rights reserved.
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