So, yes. I have Multiple Sclerosis. It's not something that you see when you look at me (when you look at me you just think "She really needs to wear something besides leggings and a t-shirt" But, I won't). It's not something I tell you when I introduce myself. It's not even something I've allowed to rule me. But, I have it. And it really sucks.
What exactly is MS? Quick summary: My current immune system attacks the protective sheath, called myelin, around the nerves in my brain and causes communication problems between my brain and the rest of my body. Think of that protective coating around all of the wires and cables in your home. It provides information and electricity to everything that runs your home from the lights to the dishwasher and computer. Now, imagine that the coating around the wires was stripped and the thin wire inside is exposed and damaged. Now you’re having brown outs and blown fuses. Eventually, the wires deteriorate or become permanently damaged. But with MS, there’s no calling the cable guy or electrician.
MS is generally different for everyone. The symptoms and degree of disability can vary with every MS patient you meet. I have been diagnosed with Relapsing Remitting MS (RRMS). Which means I go through periods of relapse and periods of time with no symptoms. I have lesions on my brain and murky spinal fluid. I have numbness. I also have pain. I have fatigue that a mom of 10 could relate to. I have confusion that a kid with 10 siblings could relate to. Most of you who know me had/have no idea. Many of my symptoms are invisible and can be managed without making it obvious. Good on me.
This past year, I have been researching methods of slowing down the progression of this disease. I spent the last two years poking myself with needles every other day. Those slowed it down a bit. Not good enough. Those injections had their own side effects. I needed to find something more. Something more hopeful, because I don’t know what level of disability the next relapse will bring. Or the relapse after that. Or after that. There are other disease-modifying medications I could try if I wanted to throw away the needles. Their side effects include brain damage and liver failure.
Autologous hematopoietic stem cell transplantation (HSCT, AHSCT or autoHSCT) is the hope I found. The “A” or “auto” simply means that I will be using my own stem cells. It has been an approved and useful treatment for multiple mylema, non Hodgkins lymphoma, Hodgkins disease, Acute myeloid leukemia, and neuroblastoma, to name a few, since the late '60's. This procedure has been performed more than 2 million times since 1967 in fact. Nearly two decades ago, doctors discovered it can halt the progression of MS as well. Outside of the US, HSCT has been a treatment for MS patients, but the the FDA has yet to approve it for my particular autoimmune disease. Many have asked me why I would risk such a treatment if not approved by our own FDA? As a fellow MS-er said “There is 100% certainty of disability with MS. There is 78% chance I won’t have disability with HSCT.” I have read, I have traveled, I have met other patients. I’ve done my homework. I just cannot wait for the FDA. While they are well-intentioned, they aren't helping me here. And time=ability.
HSCT will wipe out the memory of MS from my immune system and will reboot it with new stem cells harvested from my blood. These new stem cells will move in having no idea MS was the previous tenant. It will take one month. First, chemo. Next, mobilize my stem cells. Harvest them. Freeze them. More chemo. Get my new stemmies back. Go home.
I’ll be nuetropenic for upwards of 12 days. That means I’ll be isolated from the world and kept in a sterile enviroment until I’m cleared to go back to the real world.The procedure is quite impressive and much more complicated than I have written here, but this nutshell version is accurate enough. The medical articles on this treatment read like horror stories, but if you break it down into steps, it actually turns into a thriller.
Why would I go to Mexico? After learning about HSCT, I found out about two doctors who have worked tirelessly in their careers to perfect this treatment for so many patients with cancer and disabling diseases. They are in Mexico.
Dr. Guillermo Ruiz Arguelles is the head of Clinica Ruiz, a private clinic and the largest center in the world for HSCT for MS. Dr. Ruiz, located in Puebla, has an arm-length list of academic achievements internationally, including being a distinguished Mayo Clinic Alumni and a Fellow of the American College of Physicians. He has lead the International Hematology Society as President, is a member of the Royal Academy of Medicine, and has published hundreds of papers in medical journals in dozens of countries. Don't get me started on the awards he received, but most recently he was given the Distinguished Service Award by the Center for International Blood and Marrow Transplant Research (CIBMTR)
At the Monterrey clinic is Dr. Ruiz's partner in bone marrow transplant research, and fellow CIBMTR award recipient, Dr. David Gomez-Alamager. Dr. Gomez, like Dr. Ruiz, has spent his career treating leukemia, lymphomas and multiple myeloma to name just a few. He is the head of Hematology at the University Hospital in Monterrey and the Director of the Stem Cell Transplantation Program. As a matter of fact, his is the only unit in all of Mexico with Foundation for the Accreditation of Cell Therapy (FACT) Accreditation (I link this, because this University of Nebraska Medical Center sets the U.S. standards for cellular therapy. I invite you to click the link and see if the hospitals in your area have this accreditation). He is a member of the American Society of Hematology, American Society of Clinical Oncology, the International Society of Hematology, ASBMT and CIBMTR... I want to continue typing all of his credentials, but the facts I need to know are these: between Dr. Ruiz and Dr. Gomez are among the most recognizable names in hematology and oncology around the world.
So there's your answer. Matt (my husband, my rock, my partner... and my attorney) and I decided if I’m going to do this, I will go to the best in the world who have done this treatment hundreds and hundreds of times. I won’t find that in the US, even after it’s approved by the FDA.
I will be checking into the Monterrey clinic on April 1, with Dr. Gomez. If all goes well, I’ll celebrate my Stem Cell Birthday on April 14 (Hallmark doesn’t make cards for that, I checked).
I will have no hair when I return. I will spend the next 18-24 months spot-checking my blood work constantly. I will be isolated. I will be getting stronger. I will be finding balance. I will feel no pain. I will gain feeling. I’ll be very busy.
Foundation for the Accreditation of Cell Therapy (FACT)