I will never forget the words of the neurologist: “We think you have multiple sclerosis”. After almost four weeks of losing my vision in one eye, numbness, increasing fatigue, and having trouble walking, I entered the ER for a round of tests. The results were obvious.
Upon hearing this news, I was immediately given a large packet of information on the latest and greatest disease-modifying drugs (DMDs) which would only slow the progression of my relapsing-remitting multiple sclerosis (RRMS) not cure it. There is no cure, you see. Only the possibility of slowing the course of the disease.
To make matters worse, one doctor relayed to me the projected timeline of events my diagnosis would bring me: “Five years until you’re in a wheelchair, ten years until you’re bedridden, and twenty years until you’re dead”. Not exactly what I wanted to hear a mere two weeks before my 38th birthday.
After my dismissal from the hospital, I immediately went home and began to scour the Internet for any medical journal or news of the latest research. There were tons of hucksters with their various herbal remedies, pseudoscience diets, and miracle cures. I began to lose hope.
I happened to stumble upon a Facebook group devoted to something called hematopoietic stem cell transplantation (HSCT). With HSCT, the patient has some of his or her own stem cells removed and stored. Then, they are given a low dose of chemotherapy to kill the old faulty immune system. Once this is completed, the stem cells are returned to the patient’s body and their immune system is “rebooted”. The whole procedure from start to finish takes a mere five weeks.
I read carefully, fearing that this was another bogus treatment. When I learned that there was a current research study in the United States at Northwestern University, I knew it was more than likely the real deal. After much more reading, I learned that many patients had already received this treatment overseas. Hospitals in Germany, Israel, Russia, and many other places had been performing the treatment for years.
A light appeared at the end of the tunnel! My only issue at that point was the cost: HSCT treatments range from the low end of $45,000 all the way up to $150,000. This sounds unbelievably expensive, but when you realize that the out-of-pocket expense for treating MS here in the United States averages around $30,000 per year, it’s easy to see why so many people choose to take out a second mortgage and go overseas.
After undergoing two more exacerbations in less than six months, I knew I had to do something. Added to that was the fact that I didn’t have health insurance and I had lost a significant portion of my income while being hospitalized and treated for my disease month after month.
I read about Dr. Denis Deference at The A.A. Maximov
Department of Hematology and Cellular Therapy in Moscow and after discussing Dr. F (as his patients call him) with those who had been treated by him and his staff I knew that would be the right place for me.
I sent an email with my medical records and information to his assistant and within a few days, I learned I had been accepted for treatment.
And so, the fundraising began.
The hardest part of all of this is convincing people you are sick when you look “normal”. I don’t look sick. I’m not currently in a wheelchair or bedridden (although my first year with MS I spent a number of weeks in bed with the illness and was prescribed physical therapy to help me walk right again).
People don’t understand that with multiple sclerosis, time is everything. The disease eventually eats up our abilities until we are left impaired. Not everyone winds up in a wheelchair or using a walker, but it does leave us fatigued to the point of exhaustion and unable to complete the most basic household tasks. We miss out on life and time with our loved ones.
So I suppose my big “why” is I need to keep that time as a healthy, productive individual. I need time with my son to watch him grown up. I need time to develop relationships with friends and family. I can’t let MS steal any more of my time than it already has.