I Tried Stem Cell Therapy for My MS

The treatment was painful and risky, but I don’t regret it.

I was diagnosed with relapsing-remitting multiple sclerosis (MS) in 2014, after being misdiagnosed 10 years earlier. By the time I got the right diagnosis, my body’s functioning had worsened considerably.

I tried numerous disease-modifying medications, but everything I tried either didn’t work or caused serious adverse reactions. And I continued to relapse and decline.

My neurologist told me my future would be grisly. I felt hopeless, and I didn’t want to carry on with life in the undignified state I was living.

In Canada, where I live, hematopoietic stem cell transplantation (HSCT) is not an approved therapy for MS, but it is under research. I’d repeatedly asked my MS neurologist for HSCT since 2016; however, very few individuals meet the criteria for HSCT research in Canada, and I was not a candidate.

But a few close friends and family members learned about an HSCT treatment center in Mexico, and urged me to go. I deliberated for a while, as I had to dig deep to find the courage to face another treatment that might not work.

Ultimately, I went in February 2022 for HSCT, seeing it as a Hail Mary treatment.

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What is HSCT?

Hematopoietic stem cell transplantation (HSCT) is a type of bone marrow transplant that depletes and then “reboots” the immune system using stem cells because of their unique ability to regenerate.

The idea is that once rebuilt, the new immune system should function normally without the previous misguided cells attacking your central nervous system. In HSCT for MS, the stem cells are harvested from your own bone marrow, rather than from a donor, so it’s called autologous HSCT, or aHSCT. The entire treatment spans approximately a month.

The treatment is extreme and risky. It involves very high doses of chemotherapy to wipe out the existing immune system. I even had to sign a waiver acknowledging there was a 1% to 3% chance of death and no guaranteed outcome.

For many people, however, the goal of stopping progression is worth it.

The National MS Society has acknowledged that despite its risks, aHSCT is a good treatment option for some people, particularly those who have very aggressive relapsing-remitting MS and who have not benefitted from disease-modifying therapies, when the aHSCT is performed at a center accredited by the Foundation for Accreditation of Cellular Therapy (FACT).

Part 1 of treatment

My treatment began with 2 days of high dose chemo, delivered intravenously.

Next, I was given daily, painful injections of a drug called filgrastim, which forces stem cells out of the bone marrow and into the blood system. When enough stem cells are present in the bloodstream, they are collected via a process called apheresis and later returned to the body. I had 9 days of injections before my stem cell counts were high enough to begin apheresis.

Once the counts are confirmed, a PICC line is inserted into the veins near the heart and then connected to the apheresis machine, which separates stem cells out of the blood.

For me, it felt like a fire hose being pumped into my heart, yet sucking out just as much, all at the same time. Apheresis takes about 3 to 5 hours. Once enough stem cells are collected, they are frozen.

Part 2 of treatment

For the second phase of treatment, I had 2 more days of chemotherapy. Then, the following day, my newly harvested stem cells were reintroduced to my body via IV.

This day is considered your new immune system’s “birthday.” By the 4th day with my new immune system, a blood draw confirmed my old immune system had been depleted.

This is the most precarious time of the treatment. I was in neutropenia (a condition with no or low white blood cells) and, as a result, had zero protection against any germs or pathogens. My caregiver and overseeing physicians monitored me 24 hours a day for fever and other signs of infection.

To expedite the immune system rebuilding, I once again had daily injections of filgrastim for 6 days. Once my neutrophils were at a level high enough for me to go home safely, doctors gave me another chemo drug to ensure any remaining B lymphocytes were killed. Lymphocytes, also known as T and B cells, are involved in the development of MS.

How did I financially access HSCT?

Initially, the thought of coming up with approximately $80,000 CAD to cover treatment, a caregiver, flights, pharmaceuticals, hotel and transfers, etc., seemed unattainable. I felt humiliated at the idea of asking for financial help. But I just had to dump my pride and get on with it.

A friend set up a GoFundMe, and immediately I was overwhelmed by the generosity of friends, family, and even people I did not know! It was so humbling at times I couldn’t find words to express my deepest gratitude.

My emotional and physical experiences during HSCT

This experimental and controversial treatment was physically and emotionally rigorous, exhausting, and uncomfortable. The filgrastim shots were painful. The chemo hit my body hard and I didn’t recover well. My caregiver and doctors struggled to make me comfortable.

In addition, my MS symptoms (burning skin pain, numbness, a frostbite sensation in my feet, bladder issues, intermittent nerve “zaps”) were exacerbated along with side effects from the chemo and filgrastim. This included severe nausea and diarrhea at times, crushing headaches, spasticity, sleep deprivation, mouth ulcers, night sweats, and excruciating bladder pain.

The stress of the unknown took a toll, too. My emotions flipped from one extreme to the other in a matter of moments, depending on my body’s state. I tried different techniques to divert my focus from my physical self. I cried a lot, rocked back and forth, trying to find solace. There were times it was easier, too.

Overall, this was the hardest experience I’ve been through in my life. It required reserves of courage and patience.

My recovery and MS changes

Returning home was hard. The doctors said it would be a roller coaster, so I strapped myself in. My red blood cell and platelet counts were very low, and I was weak. The immense support from friends and my healthcare team kept me going through that period.

In the first month post-transplant, I felt a little “something” brewing. I began to stand and walk a tiny bit, and then walked and stood more solidly as the weeks and months passed. I was excited to even see a little muscle develop.

All this occurred between days of agonizing bone pain and bladder pain. Then, miraculously, after 3 months, I felt as though I had enough function and stability to drive again, which I did, soon after. And still do.

In all my years living with MS, I had never experienced improvements. This gave me hope, yet I was petrified of having hope. What if it all flipped backward?

At 6 months post-transplant, I experienced a small but challenging relapse, with a return of severe body itching and worsening neurogenic bowel. I had been warned that while uncommon, relapses like this were possible. The recommended treatment was a bit more chemo, and eventually the relapse quelled.

My biggest triumph so far occurred one day when I walked 475 steps, nonstop. I broke down in tears in the street. This was the longest I’d walked in years.

It hasn’t happened since, and while I still depend on my mobility scooter, I am able to walk short distances without a walker. My EDSS has dropped 2 points.

The takeaway

Given my disease duration (over 10 years), older age (above 50), advanced disability, and lack of new lesions, I did better than anyone could have hoped. For the first time since my diagnosis, I don’t feel as though my MS is trying to kill me. Yet, I don’t trust this disease. It is insidious and can hide dormant, potentially emerging again.

I cannot think about that. I have plans and dreams for the future. If HSCT didn’t work for me, or if I revert in the future, I still wouldn’t regret my decision. I have done the utmost possible for myself.