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This blog is another opportunity to feel grateful and thank you dear Universe: You continue to bless me with recovery and overall health.
Like many of us, I did not care to understand definitions and acronyms outside my professional career until my life changed in no time after regular episodes of neurological symptoms. I was diagnosed with a rare medical condition, Isaacs’ Syndrome (a neuromuscular condition stemming from muscle hyperactivity. It is also called Neuromyotonia, Isaacs-Mertens syndrome, continuous muscle fiber activity syndrome, and Quantal squander syndrome) and membranous glomerulonephritis (a progressive kidney disease) apart from Lyme disease (a bacterial illness transmitted by ticks) and glaucoma (which damages the optic nerve) with frequent visits to doctors and hospitals.
Though hospitals had become my second home, a place which never changed with long waiting queues not just for x-rays but even for car parking, those packed elevators, and freezing rooms however the only constant change was my doctor’s gibberish with confusing jargon. All of us in the family struggled to comprehend and I remember how I was found talking to the doctor’s subordinates to make meaning of the scribbled prescription. I always felt the need to understand those terminologies a little better if not completely, owing to those certain mandates like having appropriate information about our health eases life.
Please Note: – Though the world of rare and chronic disease terminologies is vast however through this blog I wish to share a list that eased my life while communicating with medical professionals given my medical condition: –
Antigen: – any substance that our body finds as foreign or harmful, causes our immune system to form antibodies in defense.
Antibiotic: – a substance that slows or kills the growth of bacteria.
Antibodies: – is a type of protein produced by our immune system to protect itself against harmful substances, called antigens.
Atrophy: – wasting away of organs or tissues due to any disease, undernourishment, or aging
Autoimmune disease: – a type of disease in which the immune system attacks and destroys healthy tissues and organs by mistakenly identifying them as a threat.
Autoimmune Response: – when the body’s immune system mistakenly views the body’s own tissues and organs as foreign invaders and attacks them.
Carbamazepine: – an anticonvulsant medication used in the treatment of epilepsy and neuropathic pain.
Dyspnoea: – a medical term used for difficulty or distress in breathing.
EMG, Electromyography: – is a diagnostic procedure to assess the health of muscles and nerve cells by transmitting electric signals that cause muscles to contact. It used tiny devices to record these signals into graphs.
Fasciculation: – muscular twitching or involuntary contraction of contiguous groups of muscle fibers.
Glaucoma: – is a broad term describing a variety of diseases that damage the optic nerve, which enables communication between the eye and the brain. The National Eye Institute, the vision research arm of the United States National Institutes of Health, described Glaucoma as a “silent thief of sight” as it can seemingly cause a sudden loss of vision preceded by nearly no symptoms whatsoever.
Hyperhidrosis: – a condition characterized by abnormally increased perspiration, in excess of that required for regulation of body temperature.
Hypertrophy: – the increase of the size of an organ or tissue from the increase in the size of its cells.
Intravenous immune globulin (IVIG): – is a product made up of human antibodies that can be given intravenously (through a vein).
Lymes: – its diagnosis is not straightforward as patients experience flu-like symptoms when they first contract the disease. A bullseye- or target-shaped rash seen in a few patients is an important symptom of Lyme disease, which is caused by a bacterial infection transmitted to humans by certain species of insects called ticks. Many patients do not report rashes, and only get diagnosed with Lyme when they suffer muscle, nerve, and joint pains, body aches and headaches, irregular heartbeat, and arthritis. Facial palsy, which causes drooping of facial muscles, dizziness, and inflammation of the brain and spinal cord is also seen in some patients.
Membranous Glomerulonephritis: – is a slowly progressive disease of the kidneys and develops when inflammation of the kidney structures causes problems with the functioning of the kidney.
Myokymia: – slow, undulating muscular contractions in muscles. This is a type of fasciculation present in some disorders of the nervous system. Nerve conduction velocity, (NCV) is a procedural test of the speed of electrical signals through a nerve.
Neuromyotonia (Isaac’s Syndrome): – it is a rare disease characterized by spontaneous muscular activity resulting from repetitive motor unit action potentials of peripheral origin.
As a result of muscular hyperactivity patients may present with fasciculations, muscle cramps, myotonia-like symptoms, and excessive sweating. A very small proportion of cases with neuromyotonia may develop central nervous system findings in their clinical course, causing a disorder called Morven’s Syndrome and they may also have antibodies against potassium channels in their serum samples. Sleep Disorder is only one of a variety of clinical conditions observed in Morvan’s syndrome cases ranging from confusion and memory loss to hallucinations and delusions.
Peripheral Nerve Hyperexcitability (PNH): – is a term used to include a group of conditions with abnormal electrical discharges generated from motor axons and seen on needle electromyography (EMG).
Pathogenic: – an Infection that is a biological agent that causes disease or illness.
Plasmapheresis: – in the process of plasmapheresis, blood is withdrawn from the body to remove the blood plasma. The separation of cells and plasma is done and then the cells are transfused back into the bloodstream. It is performed especially to remove antibodies in treating autoimmune conditions.
Steroids: – include many hormones, alkaloids, and vitamins. They are a large class of organic compounds with a characteristic molecular structure containing four rings of carbon atoms.
Twitching: – give or cause to give a short, sudden jerking or convulsive movement.
VGKC, Voltage-Gated Kalium (Potassium) Channel: – are important in modulating neuronal excitability in the CNS and peripheral nervous system. They are transmembrane channels responsible for returning the depolarized cell to a resting state after each nerve impulse.
During my journey, I came across many non-medical important terminologies but important enough to change the way I perceived things and gave me a new perspective towards my diagnosis, recovery, and the process of healing. Listing a few:
Family Support: – being part of a family still means being there during thick and thin without expecting reciprocation. I am fortunate that instantly – my illness became the illness of the family.
Friend: – a friend in need is a friend indeed.
Holistic Healing: – it’s a lifestyle concept that promotes physical, mental and spiritual well-being. Instead of only treating the person symptomatically, it approaches in correcting the lifestyle from every aspect.
Hope: – an optimistic state of mind that is based on an expectation of positive outcomes.
Laughter Therapy: – bringing humour into a clinical setting in order to come to terms with difficult challenges or emotions.
Medical Emergencies: – an expected serious situation involving injury or illness, requiring immediate action.
Medical Record Keeping: – a patient’s medical history or information in one place.
Mental Resilience: – a person’s ability to deal with and adapt to uncertain circumstances by using adequate mental capabilities to solve problems and move forward.
Smart Investment Ideas: – making the right investment moves that meet specific needs or set future goals.
DISCLAIMER
The views expressed above in this article are the author’s own and do not represent any kind of medical advice.
References:
Isaacs’ Syndrome | Neuromyotonia – Glossary (medindia.net)
