Many people have heard the saying “MS is a snowflake disease”. Meaning for everyone with MS, the disease manifests in different ways. No two are exactly alike. The same is true for disease onset. When MS hit me, it wasn't snow flurries, it was a full on Nor' Easter with giant chunks of hail. In a little over a week, I went from a few numb fingertips to full left-side numbness and weakness, unable to walk without two sticks. I was diagnosed a month later.
Receiving my diagnosis was both a relief in knowing what was wrong, but also like getting a death sentence. The only people I knew who had MS were diagnosed years ago, and they were not doing well. At subsequent appointments, I was given three drugs to choose between. After blood tests revealed I was JCV (John Cunningham Virus) positive, I was down to two. “We have come a long way,” they assured me, so I tried to remain optimistic. After all, you take medications to feel better. With the relapsing remitting multiple sclerosis, surely I would go into a long remission of feeling normal, maintained by my medications.
I joined support groups, as recommended by my MS nurse. It was where I learned more about my condition than I was told in my brief meetings with my doctor. The medications don't return you to normal; they just slow down the progression of your MS. They work, until they don't. At that time you switch medications and hope for the best. Progression is not only based on MRI lesions, but oftentimes it happens independent of that. It becomes a slow march into further disability as you work down the EDSS scale.
One day, not long after joining one of several support groups, a man from Australia announced he was done with MS. He would be going to Russia for something called HSCT. All I knew at that moment was this treatment involved chemotherapy and stem cells. It sounded dangerous, possibly a hoax. When I questioned him, he told me that I should do my own research. He also said that it was the only current treatment that had been shown to stop MS progression. I didn't know that it was possible to stop MS! If this were a legitimate treatment, as he said, why had my neurologist not mentioned this course of treatment?
What is HSCT or aHSCT? HSCT stands for hematopoietic stem cell transplantation. It is a chemotherapy based treatment where various drugs destroy the defective blood and immune cells in your system that caused the disease. The “a” stands for autologous, meaning, “of the self”. The cells involved in HSCT used for MS come from your own bone marrow, through the blood, not from another source or donor.
My research on HSCT began immediately. I poured over published papers in medical journals, while educating myself by watching countless neurology and hematology conference videos posted on YouTube. I began to learn the big names in MS and their thoughts on HSCT. I learned all I could about the work of Dr. Richard Burt and his work in stopping autoimmune diseases with this treatment. I joined social media to follow the journeys of people who had and were currently receiving the procedure at different locations. I learned the types of chemo therapies being used at different locations and some of the theories on why certain centers focused on non-myeloablative (gentler, not harming the bone marrow) as well as what I could do to help myself either live with it, or stop it.
I started infusion therapy, but within a month of hearing about HSCT, I announced to my family that HSCT would be my new direction. They were supportive, knowing that I do not make decisions on anything lightly, that I would only decide such a thing after extensive research. My neurologist was not supportive, but assured me she would continue my post-care if I did follow this path. I had already decided. I was going to Clinica Ruiz to see Dr. Guillermo Ruiz, who has transplanted over 1,300 people with MS at the clinics he runs in Mexico. He uses a nonmyeloablative regimen that is a modified version of what Dr. Burt developed, but does not use stem cells that have been cryo-frozen. The results from published peer reviewed studies showed that about 85% of his patients with RRMS experienced long-term remission. I began fundraising immediately. I was rejected from the BEAT-MS clinical trials in the US and was not referred by my neurologist; so going outside the United States was my only option. Somehow, despite being a small town dog groomer in the back woods of rural Maine, I would make it reality, and I did.
On November 20th, my mother and I flew to Mexico City. We were picked up by the Clinica Ruiz team to head to Puebla. The residents building known as COR was our home for the next 28 days. Clinica Ruiz requires a caretaker (a carer, as they call it) during treatment, which is why my mom joined me. If necessary, you can hire a person through the clinic as your caretaker. For me, going through this, I wanted my mother by my side.
The next day was filled with doctor's appointments. Testing made sure that I was healthy enough to withstand the treatment: blood work; spirometry; a review of my MRIs from the US and one I received in Mexico; a chest x-ray, consultations with neurology and hematology. All of my tests came back within the normal range, I was assigned to group one (there are three groups of five patients) We began chemotherapy using cyclophosphamide (also known as Cytoxan) the next day.
My group consisted of people who had come from all over the world to stop their MS. We were all there because we could not receive treatment in our own countries. None of us were ready to give into the storm that is MS.
The chemotherapy was not nearly as difficult for me as what I had prepared myself for physically and mentally. I had a slight headache the first day, but I did not even need an over-the-counter medication as it faded quickly. Physically, I felt a bit better after the first session but thought I must be imagining things. After the second session of chemotherapy, I knew I was feeling better. Symptoms like my fingertips tingling, mouth and facial numbness, and the weighted feeling in my left leg were almost completely gone. I mentioned to Dr. Juan Carlos Gazca that some of the symptoms were fading. He confirmed to me it was indeed possible, though not a common occurrence. I now could, for the first time in over a year, easily balance, look up, turn a circle without vertigo, and even dance a little. The next day, I was climbing and descending stairs without using the railing.
The next week I received twice-daily injections of filgrastim (also known as Neupogen) to help boost the release of the stem cells from my bone marrow into my blood stream. Once there was an ample supply of cells, we were transported to an area hospital for PIC line placement for apheresis. This is a procedure where your stem cells are removed from your body before you undergo your last two days of chemotherapy. My goal was to have 54 million stem cells. I produced 1.83 billion cells.
After two more days of cyclophosphamide chemotherapy, I was re-infused with my own stem cells. This day is called a “Stemmie Birthday”, which ultimately becomes a milestone day and one that is celebrated like a birthday. About 48 hours after this happens, you enter what is called Neutropenia. You have almost no immune system while your cells regenerate. Although we had prepared ourselves with a head shaving party, during this time the small amount of stubble I had remaining on my head fell out – a small price to pay for the possibility of being rid of the disease that was stealing who I was, bit by bit. I received more filgrastim shots during this period help boost my white blood count until it reached a number high enough for me to receive my rituximab infusion (also known as Rituxan) and be discharged. Rituximab is a B-cell depletion infusion you receive to eliminate any left over immune cells that may attack the body. I was infused and discharged from care on December 13, however, we stayed at the clinic until the 17th when our flight returned to Maine.
My mother and I left our family, spending nearly a month in Mexico. I had to raise and spend $54,500 for a medical treatment I was refused in the United States. Was it worth it? Would I do it again? Without hesitation, yes. My hope was to stop MS progression, but what I received was so much more. My symptoms improved in ways I never dared hope was possible. Many have gone completely, including fatigue, cognitive fogginess, balance issues, vertigo, and sensory issues on my left side. I still have some remaining tingling sensations in my mouth and on my face, but they seem to get a little better every day. I believe my results have been so impressive because I did not wait to receive HSCT, but began treatment almost exactly a year from symptom onset.
In addition to these improvements, I have also joined the board of a newly forming non-profit group called “HSCT Hope”. With fellow HSCT warriors and “stemmie sisters” Tiffany Giorgianna (also treated by Clinica Ruiz, but at their location in Monterrey) and Cassidy Chapman (treated by Dr. Burt at the end of the MOST-MS study); the group will help others with HSCT treatable autoimmune diseases identify and appropriate clinic for treatment, fight U.S. insurance company denials, and help fund raise for treatment by assisting in drafting GoFundMe pages and utilizing other fundraising methods. We must advocate for our own healthcare and well being; however, without the proper information, it is impossible to make an informed decision. I had to educate myself, and forcefully be my own advocate. Because of what I learned, along with the care I received, I want to help others too. This is one way I can pay it forward, to help share all that I have received.
My entire journey at Clinica Ruiz is available on Facebook for anyone who may be considering this treatment. Dr. Ruiz and the Clinica Ruiz staff are now my rock-stars – the people who saved my life for me, for my children, husband, family and dogs. On my Facebook page, you can see how the trajectory of my life changed because of the treatment I received.
For more information on HSCT, the autoimmune diseases it can treat, and why it should be the standard of care for all who choose it, and why it should be more readily recommended, Dr. Richard Burt's book Everyday Miracles: Curing Multiple Sclerosis, Scleroderma, and Autoimmune Diseases by Hematopoietic Stem Cell Transplant,” is an amazing layperson's guide to all things HSCT.
Anna Nicole Mosca
“Crazy Dog Lady”
I live with my husband, two children and three dogs in rural Maine where I own my own dog grooming and pet care business. I love all things dog, musical theater, cooking, and traveling with my family. Currently, I am working on starting a non-profit called HSCT Hope to help others receive the treatment.