MS: Busting the Myths
August 8, 2022 | Life with MS, Media
An Auckland nurse was diagnosed with multiple sclerosis after first believing her symptoms were due to career stress.
Zazi Gohar, 26, from West Auckland’s Te Atatū, learned she had MS, an often disabling disease of the central nervous system, in 2020 after her legs and hands became completely numb.
Gohar said she’d been experiencing symptoms of MS since she was 19 but never thought much of it.
She became a registered nurse, working in the emergency department of a hospital in Auckland, when her symptoms became more persistent.
“I put it down to stress – even though I was enjoying my job it can be stressful. I mentioned my symptoms to co-workers and they pushed me to investigate it.”
Gohar had an MRI done on her spine and saw the medical team crowding around the computer, which she knew was only done if there was something wrong.
“They decided to MRI my brain and I was told: worst case scenario I either had MS or a tumour. They found out it was MS and started me on aggressive treatment.”
Gohar now has infusions in hospital monthly which she said “helped give her some quality of life back”, but it means she can’t fulfil her dreams of travelling as she has to be in Aotearoa for treatment.
“It has been a rollercoaster of emotions to come to terms with, it took me a while to accept it was actually real but this year I’ve reached a place where I can look at information about MS and possible treatments.”
Gohar looked into hematopoietic stem cell transplantation (HSCT), which involves harvesting stem cells from the bone marrow, followed by chemotherapy to shut down the faulty immune system. Stem cells are then given back to grow a new healthy immune system.
HSCT is used for some forms of cancer in Aotearoa, but not MS, however Gohar said it had the potential to put her MS into remission, maybe permanently.
“This would be an opportunity to not have MS dominate my life in the future,” Gohar said.
Since being diagnosed with MS, Gohar is still able to work as a nurse but has moved to a post-anaesthetic ward to reduce stress levels.
She said she gets very fatigued on the weeks she’s due for another infusion and the day she has one is “a write-off”.
“It’s tricky because you need to listen to your body, but I don’t want to drop things that make me feel like myself.”
Gohar said to get HSCT it would cost around $150,000 in Australia or around $50,000 if she went to India.
She would need to stay in the country for a number of weeks while her immune system was weakened and would need to bring a support person, her mum, with her.
“When I told mum I wanted to get this she was terrified, but I’ve spoken with others who had it and people at work and I’ve decided I want this now before I get worse.”
Kate Couling, Gohar’s mum, has started a Givealittle page to help raise funds needed for the treatment.
Gohar said she hoped the treatment would become available in Aotearoa, so others wouldn’t have to struggle through finding ways to afford it overseas.
“To anyone else with MS I’d say: don’t give up on yourself, even when it’s incredibly difficult, even if you’re wobbling or incredibly numb, you can do this.”
Last week a 10,000-strong petition was handed to Parliament asking Health New Zealand to extend HSCT to MS patients.
The Multiple Sclerosis Society of New Zealand had been asking the Ministry of Health for five years to approve and fund stem cell treatment for MS.
President Neil Woodhams said if the treatment was successful, people with MS didn’t have to worry about taking a drug every day or week or going into hospital for infusions.
Original article from Stuff: https://www.stuff.co.nz/national/health/129414888/nurse-thought-multiple-sclerosis-symptoms-were-due-to-new-job-stress