With her multiple sclerosis symptoms worsening, Ballarat mum Kyllie Garrett made a last-ditch trip to Russia for life-changing experimental treatment earlier this year, leaving her family behind to do what she needed to be healthy into the future.
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The symptoms - numbness, muscle weakness, muscle spasms, vertigo, nerve pain and coordination issues - were controlling her life and limiting her ability to do what she wanted with her young children Kleo, 5, and Nixon, 3, as well as her ability to work and support her family.
So she decided to to travel to Moscow for an intense 35-day treatment known as autologous haematopoietic stem cell transplant, or HSCT, which she hoped would reset her immune system and stop her MS progressing.
The treatment is only available on a clinical trial in Australia, and Ms Garrett was not sick enough to qualify.
Ms Garrett returned from Russia in April, and in the ensuing months it seems the gruelling treatment has worked, and some of her symptoms have even reversed.
"In the month after I got home I lost 12 or 13kg of fluid which I had because of the treatment and the steroids, but once that subsided I had more energy, and I haven't worn glasses since I got back - my eyes had got so bad I wore glasses almost all the time which shows how much pressure was in my head and on my optic nerve," she said.
The doctor said I was verging on switching from relapsing remitting MS to primary progressive MS, which is where I thought I might have been headed with my health going downhill so fast. That was a shock to hear ... because the worse off you are the less responsive you are to treatment
- Kyllie Garrett
Ms Garrett still has MS symptoms, but the procedure is designed to stop the progression of the disease - and any reversal of symptoms is a bonus.
"Because I had those symptoms and that disability and scarring so long, I knew it wasn't going to change but my heat sensitivity is not as bad, nor are the muscle spasms and my mobility has improved because I've been doing pilates and physio since coming back and lots of walking and exercise which I couldn't have done before because of fatigue."
It turns out the treatment came just in the nick of time.
Tests revealed Ms Garrett had more than 30 lesions on her brain, far more than the seven that testing in Australia had revealed, and her MS was about to get worse.
"The first few days I had lots of tests. Probably the worst thing over there was when the doctor said I was verging on switching from relapsing remitting MS to primary progressive MS, which is where I thought I might have been headed with my health going downhill so fast," she said. "That was a shock to hear ... because the worse off you are the less responsive you are to treatment. Around 40 per cent of MS patients will end up with the progressive form from around 40 years of age, and I'm only 36 so didn't expect it."
After months of fundraising and organisation it was a relief for Ms Garrett to actually get on the plane and head for Moscow.
"I was more worried about leaving the kids than the treatment. When I got on the plane there was this massive sigh of relief that I didn't have to worry about all the planning and organisation any more, it was just about me and what I needed to do.
"I was just focused on getting the job done."
Fundraising covered about $30,000 of the treatment costs, with Ms Garrett dipping in to her superannuation to foot the rest of the $100,000+ bill.
Multiple sclerosis is an immune-based disease causing lesions to form in the central nervous system that interfere with nerve impulses within the brain, spinal cord and optic nerves.
HSCT destroys the patient's immune system using chemotherapy, then uses blood and immune stem cells from the bone marrow to reset the immune system. Although considered intensive and relatively high risk, the Moscow clinic boasts an 86 per cent success rate in stopping the disease's progression.
The treatment is used to treat blood cancer in Australia, but not MS.
"I found that one day of my last treatment here in Australia was 10 times worse than the month of treatment in Russia," she said. "The toxicity of the other treatments available here was so much worse compared to that."
After returning to Ballarat and recovering, Ms Garrett went to see her specialist in Melbourne. "As soon as he saw me he said he was glad I went and had it done - he could see how much I had struggled with the treatment here," she said.
"As I left the consultation he said 'I don't really need to see you any more, but I want to see you every 12 months'."
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