28th May 2024

My journey to diagnosis lasted a decade

2020 MS Connections

It took ten years for Kanya from Indonesia to finally be diagnosed with MS. Kanya opens up about a decade of mysterious symptoms, misdiagnosis, social stigma and emotional turmoil. It wasn’t until she moved country that she found answers. Read her story and see it come to life in the My MS Diagnosis animation.   

‘I was diagnosed with MS at the age of 29, but the journey to MS diagnosis actually started 10 years earlier.

10 years before being diagnosed, I began to feel numbness that lasted for hours or even days. I felt extremely tired even though I wasn’t doing much activity. I had severe headaches, double vision, and often lost my balance and fell for no reason. 

I went to many doctors, and carried out several examinations such as CT Scan, X-Ray, eye examination, and so on, but at that time, no serious problems were found. All the doctors I visited believed these symptoms appeared because I was too tired and stressed.

Complaints of double vision were considered to be just a side effect of myopia, which I have had since I was 9 years old.

5 years before my MS diagnosis, A doctor had diagnosed me with encephalitis. To ‘cure’ it, he gave me some drugs however, this treatment did not ease my symptoms, instead other symptoms appeared such as nausea, muscle aches and frequent fevers.

4 years before the diagnosis (i.e. in 1997), my symptoms worsened until I experienced temporary blindness, my blood pressure suddenly increased, and my legs suddenly became paralyzed. I was completely unable to walk.

I was then rushed to a hospital in Indonesia and hospitalized for 10 days.  At the hospital, I was treated by one of the leading neurologists and underwent a CT scan, EKG, EEG, lumbar puncture, and so on.

A week after I was rushed to the hospital, my condition suddenly getting better –  my vision improved, my blood pressure returned to normal, and I was able to walk again.

The super fast improvement made the neurologist diagnose me with TIA, or Transcient Ischemic Attack and a mild stroke.

Over the next 4 years, the symptoms I felt always appeared unexpectedly –  sometimes it was better, sometimes it was worse. All of this made me very tired and confused.

I was tired of experiencing various symptoms that came and went as they pleased without stopping. I was confused because the diagnoses from all the doctors I had visited, never seemed to really ‘fit’ with everything I was experiencing and feeling.In other words, there was never any clarity about what my illness actually was.

Symptoms that came and went unpredictably made me have to face the ‘judgment’ of the people around me. Being labelled as lazy, a liar, seeking attention, spoiled, and having mental illness were some of judgements against me because they thought I was pretending to be sick.

Furthermore, as symptoms increased so did difficulty regulating emotions and mood swings.I became very irritable, easily irritated, easily sad, and various other emotional outbursts that were difficult to control, leading to depression.

Fortunately, no matter how bad my depression is, there was always a little hope left in my heart and mind.  That little bit of hope and clear thoughts helped me a lot when I had to suppress all the negative thoughts within me. It convinced me to keep going, to move forward, step by step. Maybe just small steps, but never stop.

Furthermore, regardless of how severe the symptoms were that I experienced, my life has always been relatively active and productive with brilliant achievements in the academic field.  This achievement finally resulted in me getting a scholarship to study in Japan in 2001. And I am very grateful, because this scholarship to Japan turned out to be ‘the key’ to open the door of MS diagnosis.

While studying in Japan, I suddenly experienced paralysis again.  This time, the condition was worse than the paralysis 4 years earlier.

I was then rushed to a hospital in Shizuoka, Japan.  This is where I got the answer to all my confusion and exhaustion.

Based on a thorough MRI examination and Lumbar Puncture, neurologist Dr. Jin Yoshii, finally diagnosed me with a rare disease called Multiple Sclerosis.

After being diagnosed, it took me about 6 months to be able to walk again.

When I heard that I had MS, on the one hand I was scared, but on the other hand, I also felt very relieved, because all the burdens caused by the uncertainty of my disease seemed to suddenly all be lifted from my shoulders. After years of getting the wrong treatment due to misdiagnosis, I was finally able to get the right treatment for my disease.

My journey towards the MS diagnosis was quite long, which is why in my opinion, never losing hope and having a clear mind is the key to being able to survive.

For those who are still on the journey to an MS diagnosis, I will say  – please, hang in there! I understand how it feels to wake up and feel physically ill, confused and anxious because of we don’t know what we are really suffering from.  The pain, confusion, and anxiety will probably drag you to the worst point in your life, but once again please, hold on! When you feel tired, please take a rest for a moment, then don’t forget to continue your journey with confidence afterward.

Last but not least, never lose hope and effort, because one day the door to an MS diagnosis will definitely open.

Trust me!’

Kanya was one of the incredible contributors of the My MS Diagnosis animation. You can hear her voice and see her story animated below. Our thanks to Kanya and the Indonesian Multiple Sclerosis Foundation.

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