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Sonali’s NMO Story – The Best Laid Plans

Posted by: The Sumaira Foundation in NMO, Patient, Voices of NMO

When you and God have different plans, stories like ours get created.

My name is Sonali Tambatkar and I live in Mumbai, India.

It all started in May 2012: I was 23 and a newlywed. I clearly remember that I went to a gynaecologist for some pain in my lower abdomen. She gave me a painkiller injection for relief and the next day, severe back pain started. I was a very ambitious girl who completed my master’s in biotechnology and wanted to do further studies, but this disorder changed everything.

I went to so many orthopedics and neurologists but remained undiagnosed; they said it was just swelling in my back. I started physiotherapy and acupuncture which provided some temporary relief for my back pain.

After one year in April 2013, I suffered my first relapse. It started with severe itching on my scalp. I went to the doctor again and she said it was just dandruff. It then led to an unbearable tingling sensation and finally, complete numbness in the left side of my body. I went to a neurologist again and had an MRI but remained undiagnosed. He gave me some multivitamins and calcium tablets and sent me home.

I still gathered all my courage and started working as a lecturer in classes teaching medical students.

Everything was going well until suddenly in October 2014, I was taking classes and felt I could not read the book properly and the lower half region of my right eye was getting blurred. Within a day, 90% of my vision was affected. First, I went to an ophthalmologist and he suggested going to a neurologist as he suspected optic neuritis. This time, I went to a senior neurologist in Bombay Hospital located in Mumbai.

Finally, I was diagnosed with aquaporin-4 positive NMOSD

The doctor suggested taking IV steroids for three days and oral steroids for some days.

When I stopped taking oral steroids, I again suffered a relapse. This time, the upper half vision of my left eye got blurred and colour vision was affected. It was basically a back-to-back bilateral optic neuritis attack. The doctor started IV steroids again and put me on Azoran (azathioprine) first. By God’s grace and thanks to steroids, I’ve regained 50% of my vision. I had to leave my job and all my dreams closed in a box. I started taking Azoran daily but it didn’t work well. My WBC count kept going low so the neurologist put me on CellCept (mycophenolate mofetil), which has been working well for me until now.

The biggest challenge in all this was pregnancy. CellCept was not allowed during pregnancy and I was stable only on CellCept so we consulted a senior neurologist in Mangalore.

She suggested waiting 2 years to get stable before trying for a child. Then, after 2 years, she suggested a 3-month washout period and taking steroids during pregnancy and breastfeeding. I took steroids on alternating days during both pregnancy and breastfeeding.

We started planning in 2017 and finally delivered a baby girl in November 2018 without any relapse.

My daughter was and is a perfect, healthy child.

After eight months, I stopped breastfeeding and started CellCept again. I am stable after that and fighting with daily minor challenges like fatigue, migraine, back pain, and restless leg syndrome.

Today, I am a proud mother of a 5 year-old trying to stay positive and happy. Thank you to The Sumaira Foundation for giving me a chance to share my story. I pray it gives hope to someone.

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