Prof. (Dr) Jayanta Roy, a senior consultant in Neurology has seen hundreds of Guillain-Barré Syndrome (GBS) patients recover fully each year at the Institute of Neurosciences (INK) Kolkata. To him “the current panic spread by some sections of the media is causing unnecessary alarm” because given the right and timely treatment "GBS is a curable disease"
What do you think of this latest GBS scare? Some people are referring to it as a new epidemic or even the next pandemic.
This is not new at all. And so far, not an epidemic
GBS syndrome has been here for many, many years. More than a hundred years ago this syndrome has been properly described. In 1859 French physician Jean-Baptiste Octave Landry described five patients who died when their fever was followed by ascending paralysis, respiratory failure etc. Sixty years later, Georges Guillain, Jean-Alexandre Barré, and Andre Strohl described GBS which is named after them.
So GBS has continued to return each year and will do so beyond 2025.
I can’t say without proper epidemiological data, if this is an epidemic. But currently we have 3-4 patients at Institute of Neurosciences Kolkata (INK), just like other years.
What causes GBS?
GBS is an autoimmune disease where the peripheral nerves are attacked by antibodies which are formed due to some alteration of our immune system, often triggered by previous infections.
Normally if there is any infection, our body produces antibodies as a defense mechanism.
But in GBS the altered antibodies do not recognize our own body protein and erroneously attack and damage the antigens and proteins that are on the nerve fibers either as the covering or inside the nerve.
Why this sudden surge in the disease?
The seasonal alterations of some virus prevalent in the current scenario, is causing rapid outbreaks and so there is a surge in GBS. We see this seasonal variations in some other diseases as well. Even earlier the GBS was seen in clusters at certain times of the year. Probably triggered by viral or bacterial surges.
Has the Zika virus triggered the changes in the immune system?
The Zika virus is not alone, Norovirus, Covid, and many other viruses and bacteria could be responsible. Even a simple common cold virus could alter our immune system. Campylobacter is typically incriminated for this disease. We have seen many patients here and in the western world where this bacteria has caused an immune system alteration.
Preliminary research affirms that Covid’s impact on neurology and immunity has far reaching consequences. Some Covid symptoms were like GBS. It impaired the peripheral and cranial nerves. And interestingly many of those who got Covid 19 also got GBS.
We have seen many different types of neurological manifestations related to Covid or Covid vaccinations. We are yet to understand the mechanisms of all cases but definitely covid altered our immune system in many different ways and attacked our nervous system too - the brain, spinal cord and the peripheral nerves.
What should we do to protect ourselves from GBS?
In my opinion there is nothing much you can do to prevent the spread of GBS or protect yourself from the disease. GBS is not a contagious disease. It primarily depends on how your immune system reacts to bacteria and viruses. And everyone's immunity is different.
This disease is very rare, but the triggers are everywhere. Common cold for instance could trigger GBS in some people. How will you stop a common cold from happening to you?
So other than some basic precautions which we took during covid like washing our hands often or wearing a mask in crowded places, ensuring basic food and drinking water hygiene... there is not much we can do.
Do you think we are ready to handle the growing number of patients?
As a neurologist l feel there is no cause for concern. If you are feeling ill or have numbness in any part of your body which has developed rapidly, please get in touch with your doctor at once.
I think INK has treated over a hundred patients in just a two-year span. And almost all cases have seen good recovery. In one word GB syndrome is a fully treatable disease and I would say it is a curable disease.
Whatever GBS cases I have seen in my career almost all of them have recovered fully with time.
Some might need one month; some may need two. Even in some severe cases where the patient has been on ventilator for three or four months they have eventually recovered and gone home. They may have needed a prolonged rehabilitation of one and half to two years. But they did recover.
So, whenever I treat a GB Syndrome patient the first thing, I tell them is that this is a completely curable disease, so you need not worry about survival. And since it is a time- consuming treatment you must have patience and co-operate completely with your treatment partner.
One interesting part of GBS is it never involves the brain. So even if the patient is fully paralyzed or on ventilator, they are fully conscious, they can hear, and they do understand everything. They may not be able to speak but they are constantly worrying about their treatment, about its outcome and their survival. So, it is very important to give them this assurance right at the start by telling them to have patience, the time will come when they will be well, the ventilator will be removed, and they will eventually go home. I have seen this assurance and motivation work wonders.
Tell us about the treatment for GBS. What medicines are generally used?
The treatment of GBS is of two types - one is called IV immunoglobulin or IV Ig or iv Gamma. The second one is called plasmapheresis.
The IVIg is basically an immunoglobulin or antibody solution which is injected intravenously over 5 days based on body weight.
Plasmapheresis is another option that is a little complicated. It is done by a machine called apheresis machine or plasmapheresis machine. Here the plasma of the patient is filtered through the machine (similar to dialysis) and the antibody which is in the patient’s circulation responsible for the GBS is cleared out and replaced by albumin. It is a purification of the patient’s own plasma that helps in the disease. It is complicated because it needs a specialized machine and setup and trained personnel, and not all hospitals are equipped.
But IVIg is widely available, very safe and can be given in any setting and equally effective.
Are these treatments very costly?
IVIg is expensive, the cost of an IV Ig course in an adult patient with 60 kilo body weight is 1.8-2 lakhs.
It is expensive but it is important to keep in mind that a patient who is in the initial stage of GBS and yet delays the treatment fearing the upfront cost, will actually incur more costs down the line.
If the disease progresses and the patient goes to the ICCU and ventilator, costs will be much more than ten times. Instituting IV Ig at the right time at the early stage, with proper diagnosis, can alter the progression of the disease and reduce costs enormously.
These days patients are often acquiring serious infections from their hospital stay and more so if on ventilators. They then need to be prescribed a course of expensive antibiotics. The cost per day could be 25 -30 k for antibiotics. So many patients end up spending 2 lakhs or more for the antibiotics alone. And this is happening rampantly.
This then justifies the cost if IVIg is applied at the right time.
Moreover, if a patient has respiratory failure and needs the ventilator, then delay in instituting the ventilator because of costs can prove fatal.
What are the different types of GBS?
There are many kinds of GBS syndrome, the commonest type is what we call the “ascending paralysis”. This starts from the leg and goes up. When the legs feel weak and numb, the patient cannot stand up from sitting position, find it difficult to climb stairs, feel a tingling...then it gradually ascends to the upper part of the body involving the hands the chest muscles the throat and even the diaphragm. The patients who have these symptoms often need respiratory support and the ventilator (in less than 10 percent cases).
There is also the descending paralysis which starts from the throat. Patient cannot speak, cannot swallow. And then it may move downward.
There is also a GB syndrome that starts with the eye where patients cannot move eye muscles and patients get a squint, or drooping eyelids and patients have a problem with balance (Miller-Fisher variant).
There are many more rare variants of GBS where there is no paralysis and just the sensory capabilities are gone. The patient can walk around but cannot feel anything.
There is also a localised variant where only certain parts of the body are affected like the face or the vocal cord.
But GBS variants often come together or overlap which presents as paralysis of limbs eyes, throat, chest etc.
What are the major challenges faced in the treatment of GBS?
The problem with GBS is the detection on time. In the first few days or even a week there are hardly any signs for a clear diagnosis.
Investigation results may be completely normal. So proper analysis of the clinical history of the patient with careful clinical examination is the only way to decide.
Nerve conduction studies for instance are very important. Even in the first week, if neurologists are mindful, they can pick up some very subtle changes in the nerve conduction studies to give a clue that something is wrong. One needs to do a series of nerve conduction studies, maybe two or three days apart then it will be very easy to see how the subtle changes noticed before having developed over time.
The other study one can do is the lumbar puncture test or the cerebrospinal fluid (CSF) test. This is a bit tricky because in the first few weeks the CSF study report may also be normal. But the CSF study can be used to identify and rule out GBS mimics.
Doctors are aware that certain diseases and disease conditions may produce similar symptoms. Every case that involves the paralysis of four limbs is not GBS. For instance, a problem of the spine at the neck level could produce such a paralysis. In that case an MRI of the spine could clinch the diagnosis. And GBS can be ruled out.
Similarly, a sudden fall in blood potassium level also can produce exactly the same symptoms as GBS. These have to be excluded. If we erroneously diagnose these as GBS we would be harming the patient. So checking the blood potassium levels is a must in the first one or two days. There is also a muscle disease with symptoms that mimic those of GBS.
So, all these clinical tests need to be done, and mimics should be ruled out as appropriate. If the physicians are alert, they may see the subtle symptoms of early stages of GBS and consequently alter the natural history of the disease.
The natural history of GBS is that from its starting point it can continue to worsen for up to four weeks or so. But the disease course is extremely variable. It is not necessary for the progression curve to be the same always. Sometime patients may worsen for a week then stabilize. And the effects of the disease may be mild. And in some patients the condition may deteriorate so fast that within a few days the patient is fully paralyzed and needs ventilator support.
Early diagnosis can do a lot to alter the course of the disease. When there is a disease and a treatment in sight. It is always important to get to a good neurologist as early as possible. The other challenge is that long hospital stays expose patients to different infections. We need to watch out for these.
What are the chances for a GBS relapse?
I would say very rare. So far, we have seen only a few among hundreds.
Is it true that GBS survivors should not take vaccines?
No. If the vaccine is necessary, they must take it. There is no proof that the vaccine may again cause them to have GBS.
We are often told that nerves once damaged don't repair at all. What happens to the nerves after GBS?
The nerve cell body, once they die, do not regenerate. But here the nerve cell body is intact, only the axon or its cover is damaged. They can regenerate if the cell body and nucleus is intact. Axon takes longer time to regenerate while the Myelin covering regenerates faster.
Prof (Dr) Jayanta Roy, MD, DM(Neuro), FRCP (Lond)
Fellow, Cerebrovascular Disease, U of Calgary, Canada.
Director of Stroke Medicine and senior consultant in Neurology, Institute of Neurosciences, Kolkata.
Honorary Professor Ramakrishna Mission Vivekananda Educational and Research Institute (A Deemed University)
As told to Sebanti Sarkar
