Embracing the unknown in Russia taught me a crucial lesson

Note: This column describes the author’s own experiences with an autologous hematopoietic stem cell transplant (aHSCT). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.

In June 2016, I traveled to Moscow with two friends. The first evening we were there, we found ourselves a bit lost. We were looking for an English-friendly restaurant that had been recommended to us, but somehow we got turned around in a mall and seated where no one spoke any English. In that moment, I felt out of place and afraid. We were lost, didn’t speak Russian, and had no idea what would happen next.

Thankfully, my friends had significantly more travel experience, and they embraced the situation as an exciting adventure. Thank God for Google Translate and a waiter with a great sense of humor who didn’t shy away from the communication barrier and enjoyed bringing us different foods to sample. Although daunting at first, this dining experience became a delightful one, and it set the tone for the rest of my Moscow journey.

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We traveled to Russia to see Denis Fedorenko, a leading hematologist, so I could undergo an autologous hematopoietic stem cell transplant. This is a procedure where chemotherapy wipes out a patient’s immune system, which is then replaced with transplants of their own stem cells — the goal of which is to halt further multiple sclerosis (MS) disease activity. It’s not approved by the U.S. Food and Drug Administration, but its medications and protocols are.

The transplant ward of Pirogov National Medical and Surgical Center in Moscow. (Courtesy of Ahna Crum)

For nearly 10 years, I was prescribed various disease-modifying therapies (DMTs), to no avail. My disease course was aggressive. Sometime along the way, my neurologist switched my diagnosis from relapsing-remitting multiple sclerosis to aggressive relapsing MS in his dictation.

I failed the medications Copaxone (glatiramer acetate injection), Betaseron (interferon beta-1b), and Gilenya (fingolimod) before advancing to Tysabri (natalizumab). I don’t know that I can successfully relay the fear in the pit of my stomach when I learned I had new active lesions, even on Tysabri. None of the medications stopped my disease activity.

In fact, since the start of my MS journey in 2006, I never had a year without a couple of relapses or an MRI that didn’t showcase a handful of new and active lesions. While there are arguments about whether aHSCT should be a first-line treatment approach to managing MS, for me it was a last-chance Hail Mary pass at getting ahead of my disease.

There are multiple stages of aHSCT. Getting to Russia was a big first step, but I still had to pass a battery of preliminary tests, go through a condition regimen, complete five days of chemotherapy, spend a week in isolation, and grow an entire new immune system before knowing if the transplant would work. The entire process is full of unknowns, but getting lost in that Russian restaurant made all the difference; it taught me the value of embracing the unknown.

My experience of aHSCT

Ahna Crum with Denis Fedorenko, a hematologist in Moscow, where she underwent a hematopoietic stem cell transplant. (Courtesy of Ahna Crum)

Recovery post-aHSCT is also a roller coaster of ups and downs riddled with the unexpected, and I’ve tried to hold on to the lesson of becoming comfortable outside of the familiar.

I fought through significant complications, including low cortisol levels (secondary adrenal insufficiency) and my bones dying (avascular necrosis). But despite those setbacks, aHSCT changed everything for me. It gave me a new life to build from the ground up.

I have not experienced any disease activity since 2016 and have seen significant improvements and resolution of some MS symptoms, including spasticity, trigeminal neuralgia, muscle weakness, foot drop, heat intolerance, and impaired balance. The respite from active disease has allowed me to start a career as a dietitian.

Active MS or not, my day-to-day status still varies widely, and I don’t know what lies ahead in the next month, year, or chapter of my life. That’s life with any autoimmune disease; there’s always a looming question about what’s next in treatment decisions, finances, physical ability, etc., all of which can incite fear.

This column’s message isn’t to steer everyone toward aHSCT. MS is a complex disease, and I recognize that not everyone responds the same way to one treatment. I’ve learned, and continue to learn daily, that even when I can’t see the next step, it’s empowering to break through fear and take the next step anyway.

What I wish for you is that when you stumble into the unknown, whatever that circumstance might be for you, you look fear in the face, embrace that unknown, and take the next step forward. That step may take you on an exhilarating, life-changing journey just outside of your comfort zone.

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.