The Momma Clan

“Look either this is nothing, just a psychosomatic disorder and he’ll be perfectly alright or it could be the beginning of a very serious disorder”, and I didn’t know how to react as the neurologist said this informing me about my husband’s condition outside the room where he was admitted for motor power failure of whole body.

On the day of Dussehra everything was good at our place. We celebrated the festival with full fun and fervor. The next day, he was watching T.V. till late at night and when he got up to go to sleep he couldn’t walk properly. And the next day morning his walking further deteriorated. He even had trouble wearing shoes and putting his mobile in his pocket.

In short his fingers had stopped taking command. Just like any other person we thought it would be due to lack of Vit-D. He took one pill and somehow left for his office. He called me up around 1:00 p.m. saying that his condition was still the same and that he would like to visit a doctor the next day. Though I suggested taking an appointment the same day but he insisted for the next day but as luck would have it by 4:00 o’clock his condition started deteriorating and I received his call asking me to reach his office at the earliest.

We reached Hinduja Hospital by 6:30. One of his colleagues had accompanied us as he was not able to walk without support and his fingers were getting twisted and stiff.

He was immediately admitted in casualty and after the preliminary examination he was referred to a neurosurgeon. In the mean time all movements of his ankle, fingers of feet, hands etc. had stopped.

Upon examination, the neurosurgeon found out that his reflexes were very poor.

Immediately his MRI spine, brain cervical, angio brain were carried out and blood samples were sent for analysis. By that time senior neurologist had also reached the hospital to judge his case.

All these reports came out to be normal. So the doctors went in for NCS (Nerve Conduction Study). The results deviated from normal but were not significant enough to point in some direction. In the meantime his back had lost all strength. He couldn’t move his limbs, neither could he stand, even with support, no walking. He was totally dependent on the hospital staff.

The diagnosis was patchy peripheral motor neuropathy but the cause was still unknown.

Further blood tests, the CSF-LP (cerebral spinal fluid lumbar puncture test), repeat NCS test also deviated a bit from normal and were in borderline high range but were not sufficient enough to point towards any particular diagnosis.

The doctors were confused as the underlying causes could be many including MMN (multifocal motor neuropathy) or any other auto autoimmune condition.

The only line of treatment for such cases is IVIG (Intravenous Immunoglobulin) which is extremely expensive and at the same risky and is required to be administered under complete supervision for side effects.

Hi all,

Through this blog I would like to discuss with you about a rare life threatening disorder that our family has just battled with. And it creeps in so fast and so stealthily that it doesn’t even leave one with the time to react.

GBS – The Guillain-Barre Syndrome as it is called, is a post monsoon disease affecting the peripheral motor nervous system and in a matter of hours takes its victim under full control.

A person may be perfectly fine a day before and becomes completely bedridden in a matter of a couple of days.

A rare but terrifying disease, normally affecting children and young and middle aged population mostly males, it usually starts from lower limbs losing their power and advances upwards.

And if not properly diagnosed or left untreated it is quick enough to paralyze the facial muscles, esophagus and lungs and becomes fatal.

The trigger for this disease is classically a viral or bacterial infection which could be as simple as an influenza virus i.e. just a simple cough and cold or diarrhea, wherein the defense mechanism produced by the body to attack the virus accidentally starts attacking it’s own muscular and nervous system.

So basically it falls under the category of autoimmune disorders.

And to add to the woes of patients and medical fraternity, COVID virus, Zika virus, H1N1 have also enlisted themselves in the trigger category  making the disease more common than before.

The classical symptoms being a complete motor power loss of limbs, back and later on facial muscles and lungs which occurs simultaneously on both left and right side of body. A person becomes more of a vegetable.

But courtesy, the emergence of new viruses, now GBS has started to show differential symptoms i.e. one part may be more affected than the other and the patient may experience varying severity in different body parts.

So now in addition to GBS, we also have differential GBS and covid induced GBS and such sub categories are confusing the doctors and making the task challenging for them as this kind is mimicking symptoms of other autoimmune disorders. In such cases the test reports deviate just mildly from the normal range giving it a benefit of doubt but the disease progresses fast hence the doctors have to be extra vigilant regarding diagnosis and start of treatment, more so because the treatment also in itself has a lot of side effects including cardiovascular, renal function and pneumonia and also is very expensive.

The medical confirmation of diagnosis of the disease is the NCS test which reflects the conductivity of peripheral nervous system on passage electric current.

Because IVIG (Intravenous Immunoglobulin) , which is an extract of healthy human blood, is the common line of treatment for all other motor neuropathy related disorders too, hence the doctors are not required to wait to confirm GBS. Just the confirmation that peripheral motor neuropathy has occurred is enough to start the treatment because that’s the only way to stop further damage to the nervous system.

It’s usually a five day course in GBS cases, with doses calculated as per patient’s weight and is administered at set speeds ranging from 25 ml/hr. to 75 ml/hr. which takes about six to seven hours to complete a day’s dose. And along with this Vit. B 12, multivitamin supplements and saline are also administered. To start with, a range of injections consisting of steroids, paracetamol and other anti allergens are administered daily before final administration of IVIG to cope with normal side effects and the patients parameters are regularly monitored during the infusion process. This is followed by a week’s observation as in some cases the disease has been seen to strike back once the level of medicines decline which usually occurs twelfth to thirteenth day after the onset of first symptoms.

As the treatment progresses, the motor power very slowly returns back and needs to be aided by physiotherapy, occupational therapy, speech therapy etc as per the patient’s conditions.

The patient needs a lot of motivation and physical support to be able to stand back on his feet which may take from a week to a couple of months. And the patients are usually advised a proper rehabilitation after discharge in order to gain back muscular power and motor power.

Some of the side effects of the disease are blood clots that may form in the lower limbs due to lack of movement, deep vein thrombosis and severe swelling of feet which starts to dissolve once the movement starts.

In my husband’s case it was labelled as COVID induced differential GBS. He was administered five IVIG doses of 60 mg. each diluted in 250 ml. solution and took seven hours daily. We were lucky to have reached the hospital in time and that the disease was not progressing that fast and gave doctors  time to reach out to some diagnosis before the start of treatment. He got back on his feet and started walking with support in about ten days time after the doses finished. He is still undergoing rehabilitation which will continue for some more sessions and has shown good signs of recovery but not everybody is so lucky.

Though termed a rare disorder but now it’s quite common according to specialists. Even during our hospital stay we came across five more such cases and in two of them severity was much higher.

In fact one of the patients had to be administered a preventive IVIG dose even before his tests were conducted as a lifesaving measure as the disease had progressed a lot in a couple of hours.

Though now medical science is highly advanced and there is a treatment for almost every disease but everything comes with it’s own price tags. And though prevention is better than cure, in such cases there is nothing that one can do to prevent the disease.

It’s just that through regular medical check ups we can take care of Vit. levels etc. and take supplements as required to keep our immune system strong and well behaved and pray that it does not dysfunction in a haywire manner.

And also we need to be vigilant, as such diseases which take us by surprise are on the rise, hence instead of self medication or killing time here and there we should directly approach the concerned doctors if we suspect any weird symptoms that deviate from normal. This is the only prevention.

Timely intervention can save lives and fasten recovery.

Being anxious or worried won’t help.

The only thing that cam be done is a complete surrender and strong will power to fight back.

To signal our mind that we need this life.

That we have still lots to do.

That we can’t succumb to any such nasty virus.

I know these things are better said than done but there’s no option.

A beggar cannot be a chooser.

So there’s no point losing hope as hope is one thing which is driving the world and us.

I have survived on just hope for those many days. Just hoping that it would end here, hoping that it would not be something more disastrous, hoping that I’ll not lose the strength to assist him.

And he also survived on hope, hope of being with his children once again, hope of watching his favorite music shows and going places.

Hoping that I’ve been successfully able to get you all know about this nasty terrifying and serious disease.

Ashu Verma Chaubey