Navigating Life’s Challenges

It started as a minor stiffness in my right knee. An irritation, it didn’t ache. There was no pain. As the days went by I noticed it was getting more and more difficult for me to climb stairs. I started limping, dragging my right foot, like an invisible cannonball chained to my ankle. I ignored it thinking it would be an injury that would just go away. I had undergone a bilateral DJ stenting for a renal and upper ureteric calculi removal procedure. The next step would be to powder the fragments of kidney stone using a laser.  After the stenting procedure my blood work had shown very abnormal levels and an urinary tract infection. So I was led into thinking the stiffness in the knee had something to do with the abnormal levels in the system.

My knee was finding it increasingly difficult to bear the weight of my body. I was neither overweight nor obese. I could no longer squat to sit on the carpeted floor of the mosque or sit and rise from the comfortable chair at my office. I used my arms to support my body weight each time I sat or rose which otherwise my knees should have been capable of doing alone. I knew something was very wrong and suspected it may have something to do with the urinary tract infection or the stenting. 

We were asked to consult a general medicine doctor by the urologist to clear any doubt and the blood work did not indicate any fever or signs of dengue. The rheumatoid factor indicated a value of 13.40 while CRP was at 43.44. The doctor held my hands and asked me to squat  from a standing position. Like a regular gym squat. My knees wouldnt simply bend beyond a point. There was no pain, no numbness, it just wouldn’t fold and behaved like the hinges of an ageing door. I was directed to neurology. 

The neuro specialist ran a few physical stimulation tests and ordered a nerve conduction velocity (NCV) test to measure how fast electrical impulses moved through my body. Electrodes are taped to the skin above the nerves and a small shock is passed through the nerve to measure the speed of nerve signals. Painful it was considering I had UTI and was immensely stressed. At the end of the test, the bed was soaked with sweat.

I was admitted and told that the test indicated a suspected case of a neurological disorder- Guillain-Barré syndrome. Guillain-Barre syndrome is a rare disorder in which your body’s immune system attacks your nerves eventually paralysing your whole body. 

I underwent an MRI examination and the doctor suggested that a spinal fluid examination would be advisable to confirm the same. The procedure involves withdrawing fluid from the spinal canal in the lower back. I said no, not now. It didn’t feel right and my intuition said this was no neurological disorder or at least I hoped.

24 Hours after my admission my right knee blew up and started swelling. This had never happened before. And if this indeed was a neurological disorder there would be no reason for fluid to get accumulated around the area of my knees. This was a case for the ortho.

I was forwarded to the orthopaedics department where I underwent a procedure to drain the accumulated fluid. An incision was made on the side of my knee and the fluid squeezed out. The pathology report was not conclusive. With my right knee heavily bound with crepe bandage I was discharged with no diagnosis and no treatment. The doctors did not have an answer as to the reason for my ailment.

I decided to get a second opinion and consult an ortho from another hospital but before that I needed to undergo the kidney stone lasering and stent removal procedure. The stone was completely fragmented using a thulium laser and the stent removed. 

My UTI subsided but my numbers still remained elevated. The new ortho specialist I consulted for a second opinion or rather the fourth doctor I saw ran a few tests and put me on antibiotics. After a week, then a month, the values still remained abnormal. The stiffness did not subside, it ached every step I took. It became impossible to walk without support and climbing up and down stairs became a humongous and painful endeavour. I underwent a bone scan with radio isotopes injected into my body. The bone scan indicated both my knees as well as my spinal area as infected. But they did not know why. They failed to find a focus of infection. 

I found it difficult to sleep or to rise from the bed. After coming home from work I would just lay on the bed unable to move. I avoided bathroom breaks so I did not have to stand and walk. And one day I woke up and I could not stand up by my bedside. I just couldn’t even if I wanted to. It took effort to walk to the dinner table, which I did because that would be the only exercise I would get other than climbing the stairs at work. Food became tasteless. I stopped eating things I loved. I said no to burgers, no to chocolates and pastries. It had also become impossible for me to ride a bike beyond longer than ten minutes. The seat of my back hurt. Severely. 

I began to lose weight and muscle. I could not climb any step without a handrail to hold. I could no longer walk into pharmacies with no handrails or a wall to hold. I waited outside for the counter staff to bring my medicines and make the payment, so I did not have to climb a step. A step. I realised the importance of handrails, for the elderly and the physically challenged. It really had an impact on my thinking and how I looked at accessibility for the elderly and physically challenged. I observed roads, sidewalks, footpaths, walkways, and handrails. It felt like my right foot was chained to a cannonball. 

As time passed the doctors had not yet arrived at a diagnosis. However, he recommended keyhole surgery for both my knees which may or may not lead to a conclusive diagnosis and treatment. I was not ready for another prolonged hospitalisation, especially one without any certain outcome. Further tests were done, and they could not conclude if it was a rheumatoid disease. The prognosis was not looking good and was very deeply disturbing. They suggested that I undergo a bone marrow test. I was not ready for it. My mind wasn’t prepared for it. 

Meanwhile I kept a counter to keep track of all the advice, recommendations, health tips I received from everyone who I met and everyone who saw me limp. They said I need exercise. I need to move. I need to go to the gym. Work this out. I need to see this great doctor who they knew. I kept counting. People shelled out nuggets of ignorance simply because it cost them nothing. Someone mentioned voodoo and black magic and I picturised vivid images of myself in the semblance of a voodoo poppet, being pierced and prodded with needles. The one useful tip I took was getting enough sunlight. Catching the early rays of the sun feels good, a handy tip coming from someone rational. It stood out in a swamp of misguided words of folly of WhatsApp forwards and Insta reels rendered by folks with the confidence of a medical sciences graduate.

But they did pray, well some of them did. My mom did, so did my wife who was always by my side to hold my hand. I came to know what affection means. The vegetable vendor and the security chettan at my office among others. They just prayed, they did not share words of advice and I was thankful to them. I, in turn, had begun to pray a lot harder.

Close relatives of my extended family had been diagnosed with rheumatoid arthritis in the past and many had undergone treatment. My uncle suggested that I check with a doctor who specialised in regenerative therapy, osteoarthritis, rheumatoid arthritis and sports medicine among others. I booked an appointment and he looked at all my previous reports. He did not order any further tests. The previous doctor had done a thorough job. He laid out the possibilities in front of me and ruled out neurological disorders but said it did not indicate any degenerative disease. I hoped and prayed it was not osteosomethingcancer. He suggested that I consult with a medical college as they would have the resources working in teams to study my case as it had an angle of academic interest. I took his advice.

I didn’t wait to book an appointment at the medical college hospital where the junior ortho recorded all my information and data into the system. He recommended a keyhole procedure but before that he wanted me to consult the rheumatoid department. 

The PG doctor at the rheumatoid department was thorough and took copious notes and took time with me recording my medical history on his system. I had seen my share of house surgeons and PG doctors. They work hard, have sleepless nights and endless days. 

He forwarded me to his HOD. The senior had specific queries which none of the previous doctors I had consulted with had asked. He asked whether my buttocks hurt. It did. And I said yes, it does when I am riding a bike and this was something new. The HOD looked at all the symptoms and my medical records and said everything indicated a type of inflammatory arthritis. He ordered a gene test with my blood work and started me on medication for 10 days.

Before the end of the week I started noticing subtle but significant improvements in my movements and a reduction in stiffness. The prescribed medicines had worked.  At the end of 10 days, I was ordered to take another set of tests and they showed that the treatment had an impact on the elevated numbers and it began to normalise. He asked me to stay off any kind of muscle relaxants and painkillers which I was taking to manage the pain as  they were not doing any good for my creatinine levels. 

Walking, sitting or rising, climbing stairs had become easier like how it was before. Everything looked better and everyone looked beautiful. I was able to sleep, without pain. With no painkillers. The treatment had worked. The diagnosis was a type of inflammatory arthritis. I am not sure why any of the other doctors could not arrive at that. I thanked God and the doctors. Everyone of them. Getting better by the day, I hope the prayers do not stop.