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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.
Initially, it was on and off before it became a constant phenomenon after a couple of months when I developed a typical twitch kind of sensation throughout my body specifically in my arms and legs, the muscles rippled like something is moving under my skin even when I was asleep. Mounting work was in its prime and it felt a bit burned out however unlike most of the corporate high-flyers today, I hardly paid attention to certain health abnormalities, especially the muscle cramps and fasciculations, and never did I know that it was about to change my life forever.
Muscle Fasciculation also called Muscle Twitching is the constant firing of a group of muscle and nerve cells that come together to contract a particular muscle. Typically, it is the damage to nerves that might cause the muscle fibers to twitch. It was very disturbing during sleep at night and slowly became quite noticeable and I had little idea that the other accompanied symptoms like fatigue, body pain, muscle loss, weight loss, stiffness, and difficulty in muscle relaxation were by-products. The doctors tested my CPK levels (an important enzyme for the functioning of muscles) through a blood sample and the levels were quite abnormal which indicated muscular injury and inflammation. I was instantly hospitalized, and a detailed medical evaluation was conducted involving clinical tests such as EMG, PET scan, MRI, lumbar spine ultrasonography, kidney biopsy, and antibody tests like GAD and Caspr2, along with common urine and blood tests. Electromyography (EMG) was an important test that evaluated the health condition of the nerve and muscles identifying muscle disorder, post which the diagnosis of a rare disease was confirmed to be Isaacs’ Syndrome (a neuromuscular condition stemming from muscle hyperactivity). The rare disease was also accompanied by some chronic conditions like Lyme disease (a bacterial illness transmitted by ticks), Glaucoma (which damages the optic nerve), and Membranous Glomerulonephritis (a progressive kidney disease).
In this due course of 8 years, I was fortunate that my medical history has been discussed with doctors of different genres including some of the top names in their respective industries and after these dialogues and some self-research, I concluded certain helpful tips:
- Generally, minor twitches here and there are lifestyle-related, and making amendments could show positive results however an increased intensity in fasciculations could have serious repercussions.
- Stop consuming muscle Stimulants like coffee, asafetida, garlic, and any medicine if not prescribed, etc that could activate the nervous system.
- Control Anxiety levels and try keeping Stress-free.
- Add Nutrients like magnesium, calcium, potassium, Vit B, and Vit D to food or else start supplements.
- Stop the comparison business as every individual is unique: it is important to understand physical limitations and stop overdoing things.
- Keep hydrated by having enough water.
- Strictly keep away from tobacco and alcohol.
- Get enough rest and proper sleep.
My course of treatment:
Typically, my treatment is not specifically focused on muscle fasciculations but instead to treat the underlying condition (Isaacs’ Syndrome) that is causing it. Initially, I started with symptomatic treatment with Western medicines and therapies that seemed the only source of immediate relief which included steroids, immunosuppressants, muscle relaxants, IVIg, Plasmapheresis, etc. and then slowly drifted to a more holistic healing kind of approach to refrain from side effects and get long-term benefits:
- Alternative treatments using AYUSH methods, including various physical and mental therapies like Ayurveda, homeopathy, meditation, and yogic practices.
- I was on Electrolytes for some time to see if it can be of help.
- Several amendments were made to my diet trying to eliminate things that could help twitches and correct my digestion.
- Though all the blood tests were equally important however I took extra care of Vit B12 and Vit D levels.
My Takeaways
- My key takeaway was a treatment or medicine that works well with one does not essentially work well with others and vice-versa therefore especially in unique disorders it is essential to gauge what works well for you as there is no one size fits all.
- Muscles for sure have a mind of their own and therefore indulging myself in a mind-body technique of relaxation got tremendous benefits.
- As Isaacs’ Syndrome and associated symptoms were accompanied by Membranous Glomerulonephritis (a progressive kidney disease), extra precautions were taken while making changes in the prescription with regular follow-ups.
- In case the main doctor was preoccupied, a junior doctor’s involvement drastically improved my experience, engagement, and outcome.
- I refrained from those medicines: far too often I was prescribed medicines for problems that could get better on their own.
- Being consistent and efficient in communication through a crisis is important: I kept a common link between all the doctors.
- During the course of treatment, I developed many side effects from the medicines and treatments, like Diabetes and Blood pressure. Therefore, keeping a close watch on the symptoms, not skipping medicines, maintaining medical records, and updating my doctors were a crucial part of the treatment.
- There were times when there were adverse reactions after a new drug was added to the prescription. In such times it was strictly advised to take immediate medical attention.
- The key was to slowly build up pain tolerance, take baby steps, learn, and re-learn.
In such cases, ignorance can prove expensive and therefore I tried doing whatever is legitimate.
DISCLAIMER
The views expressed above in this article are the author’s own and do not represent any kind of medical advice.
