EXCLUSIVEHow six 'remarkable' shots gave me my life back after doctors said nothing could treat my MS
When Robbin Gordon-Cartier was first diagnosed with multiple sclerosis at 50 years old she felt like she was 'just waiting to die.'
Her busy life as a harpist, full-time teacher and travelling performer was slowly eroding because of the disease, as she succumbed to daily pain, fatigue and a limp that was getting progressively worse. She gave up performing entirely, since she couldn't carry her kit around with her.
Most upsetting, her hands, which are the key to her intricate instrument, would become numb and tingle at random - as if she'd been sitting on them for too long.
'I was going straight down hill, and that was that,' the New Jersey native, now 64, told DailyMail.com. The first doctor she saw diagnosed her with an advanced form of the disease that is resistant to available treatments, and affects roughly 1million Americans.
But in 2019, a new doctor enrolled her in a clinical trial of a promising new treatment that involved using her body's own cells to fight disease.
Robbin Gordon-Cartier was first diagnosed with MS when she was 50 years old. No one in her family has the disease, but she found solace and community in a coworker who was also diagnosed with the condition
Dr Violaine Harris, with the Tisch MS Research Center of New York, led the stem cell research. She's been at Tisch since 2004, investigating potential therapies for MS.
Today, five years after the injections — six over the course of one year — she's re-gained enough strength to be able to carry her own harp to concerts.
She told DailyMail.com she is far steadier on her feet, giving her the confidence to travel again, which has allowed her to resume performing at weddings and concerts.
Mrs Gordon-Cartier was one of 54 phase two patients who began receiving the new MS therapy in 2019, which was created by scientists at the Tisch MS Research Center of New York, and began its first phase in 2014.
The treatment, which involves injecting the spine with blank-slate restorative cells, 'makes a big impact' on quality of life for MS patients, Dr Violaine Harris, the Associate Director of Research at Tisch, who ran the study, told DailyMail.com.
Multiple sclerosis is a condition that happens when the immune system begins attacking the cells in your brain and spinal cord - shearing off the protective coating that insulates your nerves called myelin.
Eventually, this may cause the nerves to break down.
Over time, the brain begins losing tissue and the nerves have a harder time sending signals throughout the body, which disrupts how different parts of the body communicate.
This can make everything from walking to using the bathroom more difficult.
The disease can strike many different parts of the nervous system, so symptoms vary widely, but common early signs include limb weakness and tingling, fatigue, mood changes, dizziness or problems with bladder function.
MS effects roughly 1million people in the US, according to the National MS Society, and it's four times more common in women than in men.
People rarely die directly because of MS, but more commonly die because of complications the condition causes, such as severe urinary tract infections (UTIs) or falls.
Experts don't yet know what causes the neurodegenerative disease but it is possible genetics could play a role, as could a person's environment.
Dr Harris told DailyMail.com that if doctors knew what caused MS, it would be simpler to treat it.
Right now there aren't enough treatments to ease the suffering of people with progressive MS.
Progressive MS is a form of the disease in which people's disease slowly and steadily gets worse, with little to no interruption, though there's different forms. In this form of disease, there is no real respite from symptoms once you're diagnosed.
The trial looked to enroll people from this group, who had progressive MS that didn't have active brain lesions.
'We had no trouble enrolling [patients]. There’s a need for any kind of treatments for this kind of MS,' Dr Harris said.
Mrs Gordon-Cartier teaches at a performing arts high school in New Jersey during the week, travels to concerts and weddings on the weekends and attends conferences.
Dr Harris alongside Dr Saud A. Sadiq, the Director and Chief Research Scientist of Tisch MSRCNY. Mrs. Gordon-Cartier said things changed for her in her MS treatment when she met Dr Sadiq, who made her feel like there was a way to fight back against the disease.
The potentially revolutionary treatment works by taking bone marrow, the spongy tissue that produces blood cells in a person's bones, and applying a complex cocktail of drugs to the tissue in order to turn it into stem cells.
Stem cells are the blank-slate cells your body can use to make any of the varied tissue types the body needs to function properly, including those in the heart, nerves, kidneys muscles and more.
Because stem cells can theoretically be turned into any type of cell in the body, Dr Harris and her colleagues theorized they could be used to rejuvenate nerve cells lost because of MS.
The first trial, which ran from 2014 to 2016, suggested there was some potential. In it, 20 patients had their bone bone marrow extracted and turned into stem cells, which were then injected back into them three times, with three months in between each injection.
In the short term, 75 percent of these patients were able to walk more quickly, reported less brain fog and were better able to control their bladder. In the two year follow up, those gains flattened out though, suggesting that the treatment didn't have long term effects.
The phase two trial kicked off in 2018, but was published recently in the journal Stem Cell Research and Therapy. 54 participants were injected with their stem cell six times over the course of a year, with two months in between each treatment.
In the first year, half of the patients received the treatment and the other half received a placebo.
In the second year, the groups swapped.
After receiving the treatment, people control their bladder better and could walk more quickly and easily Dr Harris said.
Watching the videos of people walking side by side showed that 'remarkable' progress was made, Dr Harris said.
They even found that when treated with stem cells, people lost less brain tissue.
But it wasn't a cure.
It didn't decrease people's disability overall, nor did it reverse any of their signs of MS.
Though people got much better and quicker at walking, they still had to use devices to do so.
In the first year of the treatment, Mrs Gordon-Cartier was convinced that she had the placebo - she felt no different.
But in the second year, things started picking up. She said she felt energized, more stable and better at moving around.
Now, five years after starting the treatment, she said the experimental treatment has given her back her strength and her life.
However, Dr Ari Green, a neurologist who studies MS at UCSF and wasn't involved in the trial, told DailyMail.com the findings didn't convince him that this therapy will be effective in treating most people with MS.
He said in the future, if they do the same study again, and include other researchers outside the Tisch Center, and see similar results, that would be more clear evidence the treatment is beneficial.
Right now, the study was small so the differences observed could have been due to chance, Dr Green added.
'By chance alone, there can always be differences between two groups,' he explained.
However, he said, it is possible patients got benefits from the treatment that science might fail to pick up on, like brain fog, which is difficult to measure.
There are also a lot of structural barriers in the way that might make stem cell therapies difficult to use on a wider scale, Dr Green said.
If this treatment were to be proven effective, it will still need to undergo further testing, meaning it could be years until the therapy becomes widely available to patients.
The researchers also face the challenge of figuring out how to manufacture personalized stem cells on a mass scale, which is technology that doesn't yet exist.
Despite the challenges, however, the first two trial results have been encouraging enough that the FDA is in the process of approving the treatment for compassionate use, meaning people can apply to use it if they have no other options.
Stem cell therapy has been making promising gains in other fields, as well. Recently, researchers in China cured a man of type 2 diabetes by injecting him with his own stem cells that had been manufactured to produce insulin.
Prior to that, small studies have shown stem cells could help treat erectile dysfunction, lung disease and potentially, even blindness.
Mrs Gordon-Cartier is well aware of the downsides of the treatment. She said getting her bone marrow harvested was painful and the process for getting the stem cells injected was uncomfortable.
Even knowing these limitations, she said she would do the treatment again without hesitation: 'Sign me up.'
'I would do it again, absolutely, because I think I would get stronger. I just feel stronger. My body feels stronger... I don’t have that scary MS reality where you feel weak and like you’re going to fall.'
