How six ‘remarkable’ injections gave me my life back after doctors said nothing could treat my MS

When Robin Gordon-Cartier was first diagnosed with multiple sclerosis at the age of 50, she felt like she was “waiting to die.”

Her busy life as a harpist, full-time teacher, and traveling artist was slowly eroded by illness, as she succumbed to daily pain, fatigue, and a progressively worsening limp. She dropped out of performing altogether because she couldn’t carry her equipment with her.

Most upsetting was that her hands, which are the key to her complex instrument, were going numb and tingling randomly – as if she had been sitting on them for too long.

“I was going straight down, and that was it,” said the New Jersey native, now 64. told DailyMail.com. The first doctor she saw diagnosed her with an advanced form of the disease, resistant to available treatments and which affects approximately one million Americans.

But in 2019, a new doctor enrolled her in a medical trial for a promising new treatment that involved using her body’s own cells to fight the disease.

Today, five years after the injections – six in one year – she has regained enough strength to be able to carry her own harp to concerts.

She told DailyMail.com that she was much more stable on her feet, giving her the confidence to travel again, which in turn allowed her to start performing at weddings and concerts again.

Gordon-Cartier was one of 54 patients who began receiving the new MS treatment in 2019, created by scientists at the Tisch MS Research Center in New York and in the works since at least 2014.

The treatment, which involves injecting blank restoration cells into the spine, “has a significant impact” on the quality of life of MS patients, Dr Violaine Harris, associate director of research, told DailyMail.com at Tisch, who led the study. .

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Multiple sclerosis is a disease that occurs when the immune system begins to attack the cells in your brain and spinal cord, removing the protective layer that insulates your nerves, called myelin.

Eventually, this can cause the nerves to rupture.

Over time, the brain begins to lose tissue and nerves have a harder time sending signals throughout the body, disrupting communication between different parts of the body.

This can make everything more difficult, from walking to using the toilet.

The disease can affect many different parts of the nervous system, so symptoms vary widely, but common first signs include limb weakness and tingling, fatigue, mood changes, dizziness or problems with bladder function.

MS affects about one million people in the United States, according to the National MS Society, and it is four times more common in women than in men.

People rarely die directly from MS, but more often die from complications caused by the disease, such as serious urinary tract infections (UTIs) or falls.

Experts don’t yet know what causes the neurodegenerative disease, but it’s possible that genetics play a role, as does a person’s environment.

Dr Harris told DailyMail.com that if doctors knew what causes MS it would be easier to treat.

Currently, there are not enough treatments to alleviate the suffering of people with primary progressive MS, which affects approximately 100,000 to 150,000 Americans.

Primary progressive MS is a form of disease in which the disease worsens slowly and steadily, without interruption. In this form of the disease, there is no real relief from symptoms once a diagnosis is made.

“We had no difficulty recruiting (patients). There is a need for any type of treatment for this type of MS,” Dr. Harris said.

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 to turn it into stem cells.

Stem cells are blank cells that your body can use to make all types of tissues the body needs to function properly, including those in the heart, nerves, kidney muscles and more.

Since stem cells can theoretically be transformed into any type of cell in the body, Dr. Harris and colleagues hypothesized that they could be used to rejuvenate nerve cells lost to MS. .

The first trial, which ran from 2014 to 2016, suggested there was some potential. In it, 20 patients had their bone marrow extracted and transformed into stem cells, which were then reinjected into them three times, with three months between each injection.

In the short term, 75 percent of these patients were able to walk faster, reported less brain fog, and were better able to control their bladder. Over the two-year follow-up, however, these gains stabilized, suggesting that the treatment did not have long-term effects.

The phase two trial began in 2018, but was recently published in the journal Stem Cell Research and Therapy. 54 participants received stem cell injections six times over the course of a year, two months apart between each treatment.

In the first year, half of the patients received the treatment and the other half received a placebo.

The second year, the groups exchanged.

After receiving the treatment, people have better bladder control and can walk faster and easier, Dr. Harris said.

Watching videos of people walking side by side showed “remarkable” progress had been 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 did not reduce people’s disability overall, nor reverse any of their signs of MS.

Even though people walked much better and faster, they still had to use devices to do so.

During the first year of treatment, Gordon-Cartier was convinced she had received the placebo – she didn’t feel any different.

But by the second year, things started to improve. She said she felt more energized, more stable and could move around better.

Today, five years after starting treatment, she says the experimental treatment has given her back her strength and her life.

However, Dr Green said the results did not convince him that this therapy would be effective in treating most people with MS.

He said that in the future, if they repeated the same study, including other researchers outside of the Tisch Center and getting similar results, it would be clearer evidence that the treatment is beneficial.

At present, the study was small, so the observed differences could be due to chance, Dr. Green added.

“By mere chance, there can always be differences between two groups,” he explained.

However, he added, it’s possible that patients gained benefits from the treatment that science might not understand, like the dog’s brain, which is difficult to measure.

There are also many structural barriers that could make stem cell therapies difficult to use on a larger scale, Dr. Green said.

If this treatment proves effective, it will still need to undergo further testing, meaning it could be years before the treatment becomes widely available to patients.

Researchers also face the challenge of figuring out how to make personalized stem cells at scale, a technology that doesn’t yet exist.

Despite the challenges, however, results from the first two trials 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 don’t have no other options.

Stem cell therapy has also made promising advances in other areas. Recently, Chinese researchers cured a man with type 2 diabetes by injecting him with their own stem cells engineered to produce insulin.

Before that, small studies had shown that stem cells could help treat erectile dysfunction, lung disease and potentially even blindness.

Ms. Gordon-Cartier is well aware of the disadvantages of this treatment. She said having her bone marrow harvested was painful and the process of injecting the stem cells was uncomfortable.

Even knowing these limitations, she said she would start 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 reality of MS where you feel weak and feel like you’re going to fall.