'I've been to hell and back'

by Symptom Advice on February 16, 2011

TEARS roll down Carmel Turner's face.

She takes one step, and then another, and then another. She doesn’t stop for half an hour.

Her husband Scott and their two-year-old daughter Grace watch in amazement.

She is on the treadmill in a room of their Langwarrin home and it’s the first time she has walked in two years.

It’s a moment she thought would never happen, after two years of hell.

"I just kept putting one foot in front of another, it was a miracle, it was incredible, it was surreal," she says.

Days earlier she had been one of the first people in Australia to have a bone marrow stem cell transplant for her multiple sclerosis.

After giving birth to Grace, like most first-time mums, Ms Turner thought it would be the start of a happy and fulfilling new chapter in her life.

But when Grace was just three months old, Ms Turner started suffering severe pain and had difficulty walking. "It was like someone stabbing me with a knife in my brain, it was excruciating," she says.

The energetic high school science teacher became a shadow of her former self, sleeping most of the time.

"the worst thing is you don’t know how much worse it’s going to get … I cried every night and I didn’t know what it was," she says. "I didn’t know what to do to stop the pain."

She would rise at 8am and be back in bed at 11am, not rising again until 3pm.

She couldn’t handle heat and stopped having hot showers. She wore a cooling vest, packed with ice, 24 hours a day. No doctor could diagnose her mystery illness, and one even told her it was post-natal depression and to snap out of it.

Finally, on February 19, 2009, she was diagnosed with multiple sclerosis, a chronic disease of the nervous system that often affects young adults.

MS attacks the protective sheath around the nerves in the brain and spinal cord.

THE first signs of the crippling disease emerged 12 years ago when she visited her GP complaining of numbness and tingling in her feet. But she remained fully functional. Her rapid deterioration was triggered by Grace’s birth.

She was put on a cocktail of drugs, pills and injections, which treated her symptoms, but did nothing to halt the disease and her downward spiral continued.

"I could barely walk. I was really bad," she says. "I used a wheelchair, a walking stick and a walking frame."

Mr Turner says: "She couldn’t even get to the other side of the kitchen without a walking frame.

"as soon as she was diagnosed, every day she just got worse and worse."

The couple were so desperate they bought $1000 worth of vitamins from a door-to-door salesman, who claimed they did wonders. of course, they did nothing.

She then heard of bone marrow stem cell transplants being done in Australia and she made an appointment with Canberra neurologist Colin Andrews.

For years, Australians have been flocking to countries like Switzerland and Israel to have this treatment, which has been around for more than a decade.

Australian doctors were reluctant because it was very risky. the death rate was 10 per cent, but has fallen to below 1 per cent.

The first transplant in Australia was done two years ago by Perth neurologist bill Carroll and since then a dozen have been done.

Dr Andrews says the treatment stops the progression of the disease, as well as reversing some of the damage it has done.

But it’s too early to call it a cure. "in 70 per cent of patients there is no evidence of occurrence of the disease over 100 months, but what happens beyond that we don’t yet know," he says.

Carmel and her husband pack their little girl off to live with relatives and start her stem cell bone marrow transplant in Canberra.

Haematologist Dr Michael Pidcock likens the process to rebooting the patient’s immune system.

SHE begins the two-month course with chemotherapy at Canberra Hospital to destroy her faulty white blood cells, so they no longer attack the nerve sheaths.

Back at their rented Canberra flat, she begins the gruelling daily task of injecting herself in her stomach with a drug to stimulate bone marrow growth.

Eight days later she is back in hospital, ready to have her bone marrow stem cells harvested.

She is hooked up to a machine, which her blood flows through and it extracts her stem cells, collecting them in a bag. Altogether six million stem cells are harvested, frozen and stored.

A month later, she begins a heavy course of chemotherapy to knock out her immune system and any remaining bone marrow cells.

On November 3, her big day arrives and her harvested stem cells are re-infused into her.

Days later, her white blood cell count drops to zero and with no immunity, she feels very sick, slipping in and out of consciousness.

"my wife doesn’t stop talking, but she didn’t utter a single word for 24 hours." Mr Turner is worried.

She develops two infections and is put on strong antibiotics. She has painful ulcers in her digestive tract.

Eight days after the transplant, her white blood cells increase, indicating bone marrow has regenerated.

On November 18 Carmel is discharged from hospital, returning to Melbourne to begin her new life.

She starts walking on her treadmill, sitting on her exercise bike and doing stretches for 2 1/2 hours a day.

One of her most triumphant moments is returning all her aids – her shower chair, toilet seat and food trolley – to the council.

"I’m starting to get my life back and hope. we haven’t had any hope for a very long time," she says.

"you feel like you’ve gone to hell and back and you’re finally coming home and getting better."

She hasn’t needed her wheelchair in three months. It is folded up and tucked behind the washing machine gathering dust.

"I feel 100 per cent better than what I was, I have no pain, I don’t cry myself to sleep any more," she says.

"I have not had one stabbing pain in my brain.

"I have not had one pain in my spinal cord since I had the treatment."

WHILE she no longer has MS, the damage it wreaked remains, but she hopes it will start to repair itself.

"I’ve only got a 20 per cent chance of having another attack, so hopefully this is the end of it," she says.

Ms Turner has been embracing the simple things in life, like tucking her daughter into bed at night and taking her to the park.

She has her first follow-up medical appointment next week, an MRI scan.

Dr Andrews says he expects the MRI to show a lot of improvement, but there may still be some evidence of damage from before.

But for now, Carmel Turner is just enjoying being a normal mum for the first time. the new chapter has well and truly begun.

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