Isaac Syndrome: Here’s What You Can Learn From My Experiences

Mudit is battling a rare disorder called Isaac Syndrome. He shares his learnings and his wisdom

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 my personal experience, hoping to help others suffering from Isaac’s Syndrome.

It's our responsibility as a clan to spread awareness and share our cumulative experience for each one’s welfare. My name is Rachit Shah and I am a senior executive in the Investment Banking space in Mumbai. I have been battling Neuromyotonia since two years and am still a part of the combat zone.

I have previously chronicled my personal journey through discovery and treatment of a disorder so rare barely 40 cases been diagnosed in India. You can read Part 1 of my blog here. I thought of writing part 2 of my blog to share some lessons learnt the hard way.

My Experience, the Hard Way

Here’s an itinerary of recommendations that can be inculcated for quality fighting spirit if you are battling with a life long disorder.

• Disease: - Dis – Ease. Body & Mind needs to be at ease & in common synergy
• Most Critical: - A good doctor and team (The holy trinity between the doctor, you & the treatment becomes a dangerous Bermuda triangle when there is communication gap)
• Adopting to new aspects of treatment can contribute to healing: - Yoga, Meditation, Walking, Calmness of mind & body, Being positive
• Important: - Make a proper synopsis of your condition before consulting any doctor (he needs to know it all, from what medicines you are taking, to various treatments and other doctors you’ve consulted before and the tests you’ve got done)
• Changes in lifestyle can work wonders (eating, sleeping, drinking habits)
• While on medication, close monitoring of sugar & BP levels, eyes, stomach and kidney is must
• Keep in mind that allopathy has symptomatic drugs which are not the cure; therefore trying alternate streams of medicines can be helpful from a longer term perspective
• Always keep yourself involved with other things - for mind distraction
• Surroundings matter: Keep it positive (The need is to do more even with less)
• The self-management plan should be reviewed from time to time to ensure the advice remains current

• A dose of care can cure the impossible
• Right body postures can help reduce pain
• Read about your own condition & keep yourself informed
• Avoid and try reducing the dosage of pain killers you take from the physical longevity prerogative: - try SRP (systematic reduction plan)
• Carefully watch out for any infection. And itching, scratches, pain, and uneasiness should be discussed with the doctor
• People on steroids and suffering from high sugar levels should maintain a strict diet chart
• Enough water in-take with medicines: Swallowing medicines without enough water may prevent the medicine from acting properly and may even lead to undesired side effects in some cases. One example is the class of drugs known as nonsteroidal anti-inflammatory agents
• Eat less Sugar, you are sweet enough already. For me the following helped in controlling my sweetness –

1. Bitter Gourd juice
2. Indian Gooseberry juice
3. Jamun fruit grounded seed – one spoon on empty stomach

• Gluten free food might help relieve some symptoms
• Family, a nature’s masterpiece: One of my biggest strengths and support function in this tedious war field was my family. I never realized when it became ‘Our’ journey from ‘My’ journey.

There is no such thing as a perfect family. For life time partnership each member has to become, in a special way, the servant of the other. I am blessed to have profound vital forces safeguarding me and we are still holding on to our roots. Even if I try penning down their support and be thankful to my parents and siblings, it will be a manual, even before I realize.

• Health cover: One of the most important aspects of my treatment was the health coverage I had. It provided me with financial security, peace of mind, coverage of specific medication and ailments and cashless hospitalization benefits.
• Try Diving down not drowning down health care cost: We can’t shy away from the fact that world’s most expensive drugs fall under the umbrella of ultra-rare diseases. However all patients like us have legitimate expectation of treatment whether the condition is common or rare.

At times, being smart, is to know when to play dumb. Whenever, I sensed the treatment could cost a bomb, I connected with genuine distributors, rather than being on retailer’s disposal or dependent on hospitals.

Medical Streams I Tried and Tested

As I navigated first the diagnoses and then the treatment for Isaac Syndrome, I kept my mind open to all streams of treatment. I have listed below the fields I tried and tested with varying degrees of success.

They that will not apply new remedies must expect new evils.

1. Allopathy (Mankind has survived all catastrophes. It will also survive modern medicine – Gerhard Kocher)
2. Naturopathy (The art of medicine consists in amusing the patient while nature cures the disease)
3. Homeopathy (Extreme remedies are very appropriate for extreme diseases)
4. Yoga (Yoga teaches us to cure what need not be endured and endure what cannot be cured — BKS Iyengar)
5. Meditation practices (Natural forces within us are the true healers of disease)
6. Music therapy (One good thing about music, when it hits you, you feel no pain - Bob Marley)

Reach Out on Social Media

Reach out to fellow survivors, fellow journeymen. Connect via Facebook to these groups: Isaac’s Syndrome, Neuromyotonia, Cramp Fasciculation Syndrome, Peripheral N.

1. Though it’s a closed group but one can connect with the admin to join
2. People suffering from this disease worldwide exchange ideas and share their stories

Doctors Who Contributed

• Dr. Ashok Panagariya (Neurologist):- 7, Raj Niketan, Moti Doongri Road, Jaipur, Rajasthan 302004. Phone: - 0141 262 0585. He is my main doctor.
• Dr. Bhawana Sharma (Neurologist):- 381, New Sanganer Road, Laxman Path, Vivek Vihar, Jaipur, Rajasthan 302019 Phone:- 0141 229 0496
• Dr. Nirmal Pandey (Neurologist, Kanpur):- He was among the few who diagnosed and started the right treatment
• Dr. Khadilkar (Neurologist, Bombay Hospital)
• Dr. Saumil Shah (Gastrologist, Mumbai)
• Dr. Sanjeev Amen (Rheumatologist, Mumbai)
• Dr. Laxman Pillai (Naturopathy, Nature Cure Hospital, Hyderabad)

You Can Also Contact...

• National Organization for Rare Disorders (NORD)
  55 Kenosia Avenue
  Danbury, CT 06810
  [e-mail]
  http://rarediseases.org Tel: [phone]; Voice Mail: 800-999-NORD (6673) Fax: [phone]
• For additional information about the NINDS research programs, contact the Neurological Resources Unit and the Institute's Information Network (BRAIN) at:
  BRAIN
  PO Box 5801
  Bethesda, MD 20824
  [phone]
  http: //www.ninds.nih.gov
• Mr. Sarosh Irani (Researcher):- [e-mail]
• Ms. Angela Vincent (Researcher):- [e-mail]

On that note I would like to suggest this - Thinking of disease constantly will intensify it. Always think 'I am 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 taking an initiative helps.

(Rachit Shah is 38-years-old and had been battling with Isaac Syndrome for last two years. He now wants to create awareness and to educate those who may be battling rare disorders. You can read Part 1 of the blog here.)