Hello Dear Ones! My name is Ronald and i am from India. I was a software professional with IBM in 2006 and that is when i was diagnosed with Cervical Dystonia. It started with a mild neck movement in a "Yes Yes" position which was barely noticed by me and others. After a few months it became worse and was noticible to my collegues, friends and family. At first i thought it was just some kind of a deficiency, so i visited a general physician and took some meds but was of no use. I then got an MRI done which showed nothing.
I did some reaserch online but back then there was nothing i could find that resembeled my symptoms. My friends and family suggested i visit a Neurologist, so i then booked an appoinment with a well known Neurologist in my city and even he had no clue. He first said it coould be Parkinsons but i was way to young to have it, so we ruled that out. He then out me on some medications which made me feel drowsy and weak all day, it did help the tremors but it came with a cost of my daily routine hence i had to stop it immedaitely.
After a few weeks, i met the Doctor again and he suggested we try Botox, i was ready as i woould do anytiing to get this cured. So, the following week we fixed the time for the treatment and had 200 units of Botox injected in 5 different areas of my neck, Botox does take some time to work, sometimes it takes a month to show the effects. It had past 6 months already and the Botox did no good for me, infact it made my neck muscles tighter and harder to turn my head left & right during work. The doctor then suggested he injects 400 units instead, so we tried that as well, we waited another few months but unfortunately it did nothing.
In the early 2008 i had to quit my job as it required to focus on the computer screen for long hours, due to the tremors it use to effect the way i walk too and balance myself. I have faced alot of humiliation by friends, collegues and strangers and made fun of many times which made me isolate myself for weeks at home. Since then, i have tried Homepathy, Ayurved and excercises but none showed any relief. With time i realised that i will have to llive with it and make adjustments to my daily lifestyle as life is not going to be llike how it use to. Cervical Dystonia just got me more depressed, irritated and hopeless all these years, however, there are many who have found treatments that work for them, but for a short period of time as there is no Cure for it.
Hence, in the recent years i started taking initiatives to bring about awareness of this disorder, it can come to anyone and can affect any part of your body. Its not hereditary nor can it spread from one person to the other. Dystonia does not show on MRI's , Scans & blood tests, it can be diagnosed only by observations by the doctor. I write articles to help find people answers to their questions as i have been in their shoes and i know the first few weeks are the most difficult and confusing. So, join me and our fellow warriors to help spread awareness, real life experiences, treatments, discussions and your personal stories like this one so that we may find hope again.
Yours in this journey, Ronald 😊
0 Comments