By Ankit Garg
Ankit Garg is a senior executive in the Investment Banking space based out of Mumbai. He is a 38-year old individual suffering from Isaac syndrome since 2 years. His case study on Isaac syndrome based on his personal experience is an attempt to help others suffering from the same.
As a clan, it’s essential for us to spread awareness and share our cumulative experiences for each other’s welfare. I truly believe that with every opportunity comes more responsibility. This is a small initiative dedicated to all those who contributed immensely towards my rugged journey for the well-being of patients like myself. My belief towards fate, human values and self-education have grown with time during my journey.
My journey: The beginning
I would be planning for my future rather than write this article if only I had known a couple of years back. I was fit as a fiddle with no peculiar medication or known allergies except periodic diarrhoea for a couple of months. There was no history of alcohol or any other substance abuse. I wholeheartedly believed that “true health care reform begins in ones kitchen“.
One evening in February 2016, I got trapped in severe pain in the lumbar region and experienced continuous cramps in my right leg. Along with aggravating pain, I also felt very stiff. Gathering all my muscle, I presented myself to a conventional orthopaedic who put me on drugs after a thorough investigation. When matters became worse, I decided to see my gastroenterologist and was advised to get my CPK levels tested immediately and consult a neurologist.
My treatment began with a detailed medical evaluation. Polymyositis was diagnosed and I was on steroid therapy for some days. General examinations revealed an average body build but the motor examination reported average muscles increasingly getting wasted, with acute stiffness in the upper body. An excess weakness with spontaneous gross fasciculations in both arms, on the face over the masseter muscle and around the eye, were reported. However, coordination and plantar reflex were normal.
Nerve conduction study and EMG showed neuromyotonic discharge with fibrillation, positive sharp waves and continuous muscle fibre activities thereby confirming the diagnosis. Special blood tests were conducted to detect specific antibodies which were negative. I was diagnosed with Isaac Syndrome or Neuromyotonia in the month of March 2016. Some of the other tests showed traces of Membranous Glomerulonephritis (a slowly progressive kidney disease). The team of doctors decided on an IVIg therapy involving intravenous injections.
What is Isaac Syndrome?
Isaac Syndrome also called Neuromyotonia is hyperexcitability of nerves that causes spontaneous muscular activity. The classical three symptoms to diagnose the condition includes involuntary muscle twitching under the skin (called fasciculations), muscle cramps or stiffness, and myotonia or pain. It is a rare disorder which causes exhaustion and overall discomfort even during sleep.
Though the aetiology of the disease remains unclear, some doctors say that the main causes may be acquired, hereditary or as the consequence of an underlying cancer in the body. There is some evidence to suggest the role of an autoimmune factor where antibodies are directed towards the potassium channels in motor nerve terminals of the muscles.
Finding the right doctors
Soon after, the medicines denied integrating with my system. Diarrhoea which was on a break for a while again took its full swing. Pain, sugar, BP along with other symptoms returned and my hopes of recovery seemed like a daydream with open eyes. Unexpectedly I was getting weaker, I slept for almost 14 hours a day due to weakness and persisting pain in-spite of being on heavy medications. I was recommended to be on complete bed rest till things started to improve a bit when we decided to see Dr. Panagariya and his team in Jaipur in August 2016. In November 2016, I took IVIg therapy again, in Jaipur which had to be stopped midway since my body was not responding to the treatment.
I was given some medicines with immunosuppressants which I continued for two months. In March 2017, as the overall health stats didnt show favourable improvement, I was asked to take weekly shots of ACTH injection (It may work directly on the brain in addition to stimulating the adrenal glands. It may also be used in the treatment of various other childhood seizures when other treatments have failed). I started to revamp, though for a couple of days there was a weird feeling in my brain.
An alternative approach
A crucial part of my treatment agenda was Naturopath. I came across a centre in Hyderabad and decided to try it for a week. Change in my daily diet chart, which included a lot of coconuts was much welcome. Setting strict expectation with ones palate is a crucial step to lifestyle modification. On my second visit to Naturopath in Rishikesh, I worked on my food habits, meditation and body posture corrections. We all have the capacity and strength to expand our conscious mind with interior research. An amalgamation of naturopath treatment with a spiritual touch can deliver extraordinary results if followed diligently and inculcate as a routine change.
Soon after, painkillers which were on sabbatical became a daily phenomenon again. I was admitted to Medanta Medicity in Gurgaon for Plasmapheresis in Dec 2017. Though I was taking the procedure light, it proved me wrong, each passing day. I was discharged 20 days later.
Learning along the path
I truly believe that the holy trinity between the doctor, yourself and the treatment becomes a dangerous Bermuda triangle when there is a communication gap. Being well informed about one’s own state and conveying it properly is extremely critical. Simple changes in lifestyle like eating, sleeping and drinking habits can work wonders. I feel extremely lucky to have my family stand firm as my backbone all throughout this journey. Last but not the least, mastering one’s own mind and being positive is the key to recovery.
What about my battle with Isaac syndrome?
It continuous, but I am focusing on the journey, not the destination. On that note I would like to suggest that: Thinking of a disease constantly will intensify it. One must always feel healthy in body and mind. As Charlie Chaplin once said, To truly laugh, you must be able to take your pain, and play with it. Easier said than done but making an initiative would help.
Disclaimer: The author name has been changed.