As Anne Frank once said ‘’ If I haven't any talent for writing books or newspaper articles, well, then I can always write for myself’’, I thought of penning down a lot from my personal experience, hoping to help others suffering from Isaac’s Syndrome.
I am not, just a bed number (case study):-
If you had told me a couple of years back, I would not be writing this note instead planning into the future. A part of me is surprised, as was all healthy & hearty, not on any peculiar medication & no known allergies except periodic diarrhea since a couple of months. There was no history of alcohol or any other substance abuse & completely believed that true healthcare reform always starts in one’s kitchen.
As a senior executive in the Investment Banking space based out of Mumbai, my experience journey speaks in itself, from being recognized as the Employee of the Year to having the maximum number of Channel Partners to have recorded, deployment in exotic products to have bagged the maximum number of reality deals in the organization, I am a 38 year individual with parents & a sibling in the family.
One of the evenings in Feb’16 during my walking session, got trapped into a severe pain in the Lumbar region & continuous cramps in right leg. The pain could be described as some sharp object stabbed at the lumbar extending till the femoral region which started alleviating & aggravating.
Next morning was tough as the pain still persisted & was accompanied with enough stiffness which made movement toilsome. Anyhow gathering all my muscle, I presented myself to a conventional Orthopedic who after a thorough investigation put me on drugs.
The post pain realization of diarrhea slowly denting the body had factored in. All of a sudden things took an evil turn & seeing my Gastroenterologist again seemed a wise decision. He asked me to get my CPK levels tested immediately & consult a Neurologist. As the levels were very high, I preferred returning back to my hometown in Kanpur as soon realized that a gig’s world’s was quickly transforming into serious profiling. It was inconceivable how I was bought directly to be hospitalized from the airport with no guess that my encounter with time had just started.
The essential first step in managing the situation began with a detailed medical evaluation. One after the other, investigations started & the doctors decided to put me on the Steroid therapy for next 5 days as they diagnosed Polymyositis. Post being in the hospital for a week I was advised to take up my further investigations in Bombay Hospital under a team of experts.
In March’16, I got under the lights with general examination which revealed average body built whereas Motor examination reported average muscle status with wasting. Presence of stiffness all over was more in the upper limbs. There was excess weakness with spontaneous gross fasiculations in both arms & in the face over the masseter muscle and around the eye. Coordination was normal and plantar reflex was normal. Nerve conduction study and EMG were done and confirmed the diagnosis showing neuromyotonic discharge with fibrillation, positive sharp waves and continuous muscle fiber activities. Special blood tests were conducted to detect specific antibodies which were negative.
I was diagnosed with Isaac Syndrome even called Neuromyotonia in the month of March’16. Some of the other tests showed traces of Membranous Glomerulonephritis (is a slowly progressive disease of the kidney. It leads to changes and inflammation of the structures inside the kidney that helps filter wastes and fluids. The inflammation may lead to problems with the functionality).
The team of doctors decided on IVIg therapy injected intravenous, which is the use of a mixture of antibodies to treat a number of health conditions. Considering the tests (EMG, Pet-CT, MRI Lumber Spine, Sonography, Kidney biopsy etc...) & treatment, my stay at the hospital was almost for a month. I was discharged from the hospital in April’16 with some medicines & a suggestion to consult another neurologist in Lucknow, if need be with a recommendation that there is no such thing as a fair flight & all vulnerabilities must be exploited.
I couldn’t lie to myself, & started to laugh on the ambulance not realizing that feeling better was just a temporary phenomenon. Soon my health proved a tragic experience wrapped in bonkers, making me crawl through broken glass & within 3 months timeframe I was on my way to Lucknow. As it’s always said that no medicine or doctor has a strike rate of 100%, I could experience it happening in my case. The medicines denied integrating with my system. Diarrhea which was on a break for a while again took its full swing. Pain, Sugar, BP & all the other symptoms returned & my hopes of recovery showed signs of a day dream with open eyes.
Unexpectedly I was getting weaker. The situation remained the same for some time where I slept for almost 14 hrs a day due to weakness & persisting pain in-spite of being on heavy medications with pain killers, immunosuppressive agents, blood pressure, intestine related medicines, diabetes, probiotics & steroids became a part of my daily food platter. The daily intake of medicines went as high as 38 with enough food restrictions due to shooting sugar levels, fluctuating blood pressure & diarrhea. I was recommended to be on complete bed rest till things started to improve a bit when we decided to see Dr. Panagariya & his team in Jaipur @ Aug’16.
In Nov’16, I was again admitted for IVIg therapy, in Jaipur hospital which I did not respond to & had to be stopped midway.
I was asked to go to Mumbai again, this time to see a different set of specialists to know a little better, the difference between stories & realities. The trip came across as Phishing in my own backyard due to the suggestions varying rational expectations.
I was given some medicines with immunosuppressants & ask to continue it for some good two months.
In March’17 as the overall health stats didn’t show favorable 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 treatment of various other childhood seizures when other treatments have failed). I started to revamp though for couple of days there was a weird feeling in the brain.
When it’s wise to have an alternative health, as a mainstream (May’17): - A crucial part of my treatment agenda was Naturopath as I am always on a look out for therapies which could help me from a longer term perspective without much of side effects . Came across this center in Hyderabad & decided to try it for a week. Post my visit there & meeting the doctors, the need of staying back for longer was felt which lasted for a month. Due to change in my daily diet chart, the stomach did settle to a lot extend. I realized that they added a lot of Coconut in their food curries which has anti-inflammatory qualities without making any change in my allopath medicines. Setting strict expectation with one’s palate is the key & crucial step to lifestyle modification.
The Indian state of mind & nature sense (July’17): - Naturopath treatment was impressive so I decided to make a second visit @ Rishikesh, this time with a pinch of spiritual touch. My stay lasted there for almost a month with corrections in food habits, meditation & 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 inculcated as a routine change.
As medicines & treatments have limitations, the health keeps showing signs of deterioration periodically. It was time for a checkup with my monthly health stats. My doctor made some changes in the medicines & asked me to wait patiently for results to unwind. Pain killers which were on sabbatical became a daily phenomenon again. I was admitted to Medanta Medicity @ Gurgaon for Plasmaferisis in Dec’17. Though I was taking the procedure light, it proved me wrong, each passing day. The central line which was inserted around the pelvic region, created issues with its inlet & was a nightmare till the last day of completion.
Post discharge it took me good 20 days to get a bit normal as there was enough weakness & usual pain at the back & thigh area, all medications being like before. The journey continuous……. I am focusing on the journey, not the destination. Therefore if you can’t go back to your mother’s womb, you’d better learn to be uncomfortable & fight back. To do otherwise is to settle.
(The above was Part 1 of my blog about my personal journey as I dealt with a rare disorder called Isaac Syndrome. In Part 2, I’ll talk about the disease, treatments, therapies and experimental trails currently underway to better understand the disease)