Please help my sister in her fight against MS and in her journey for a stem cell transplant. Below is her story.
STEM CELLS ARE THE ANSWER
My arm started bugging me in May 1991. I’m a senior in college and about to graduate and move to Colorado…big things are happening in my life. The shoulder area of my left arm, where you’d get a shot, burned like crazy but nothing was there. It felt like I had a cut on my arm and salt was in it…it just stung and burned. It then started to travel down my arm to my hand. It was all very strange, strange enough to get me to the school doctor on campus. He poked my arm a bit and referred me to a neurologist. I can’t say I was very alarmed yet at this point. My sister came with me to my appointment and in retrospect it was your typical neuro appt. Stand on one foot, tracking eye movement and grip strength…I felt like I passed with flying colors. Then the doctor asked a very revealing question. “Have you felt any other weird things in the past 6 months to a year that you thought were odd but they went away?’ Why yes, I said. When I’d put my chin to my chest I’d get a weird “rush- like” feeling down my back and the backs of my legs. The doctor told me later that was his aha moment. That phenomenon is called L’Hermittes, named after the doctor who discovered it and is caused by the affected nerves in the spinal cord.
The doctor sent me right away to get an MRI of my cervical spine and said he’d be back in touch in a few days. But it was the next day when he called and wanted me to come to his office. Ok wait, what? Now I am worried. My sister came back with me to his office and he told me he suspected I had MS-Multiple Sclerosis. What’s that? Literally my first question. MS is a degenerative disease of the central nervous system. The myelin sheath covers the nerves and in MS it is the myelin sheath that is destroyed disrupting the messages being sent from the brain to the spinal cord. Ok, so it’s not cancer? My second question. See this second question carried more meaning for me because my mom had died a few years earlier from cancer so I knew that killed people. MS- I didn’t know anything about that. I felt good and I had plans, this MS wasn’t going to stop me. My family thought otherwise. They didn’t think I should go to Colorado. I really didn’t think twice about it. The mountains were calling. I’m glad I never wavered, I can’t imagine my life without Colorado. I met Ralph a year later and the rest is history so they say.
The MS has always been a caged dragon…getting out every once in a while but always going back in the cage. However, the last six years have been a slow steady decline in my mobility. I’m still walking…not far or fast…but walking. I have a cool new scooter to help me get around but the future is a bit scary to think about. Am I going to continue to decline? Yes, says the research and doctors. It’s funny how the MS was easy to ignore in the beginning. Thank God I was diagnosed before the age of Google…I didn’t spend hours researching how awful it was going to be. MS became a part of my life but it did not become my life. I put it in God’s hands and trusted Him.
Over the past 25 years I’ve come very close to starting the latest and supposedly greatest MS drugs but always had a deep intuitive message saying no, not yet. Well here I am, going into year 26 and I am finally hearing yes! STEM CELLS ARE THE ANSWER! I have been reading about and studying stem cells for over a decade now. The research outcomes are amazing, they are stopping MS in its tracks and many patients are even seeing symptom reversal. In the US there are several clinical trials going on using HSCT-Hematopoietic Stem Cell Transfusions. These trials have very strict criteria to be admitted in. Most trials look for a patient who is still relapsing/remitting who has not had the disease for very long. I have tirelessly applied and been repeatedly rejected from all these trials. Fortunately, doctors in other countries are performing this same exact procedure with astounding results. Even for patients like me who have had it a long time. The problem? It costs a ton of money and is in another country. That seemed very overwhelming to me at first. The money has been a roadblock…this procedure was out of reach for me. But I kept reading stories about people who got their lives back. They can walk again without assistance and can do what they want without thinking about how many steps it’s going to take. I know this is what I’ve been waiting for! I’ve been trying to treat the MS naturally for many years using food and other alternative methods as my medicine. Although some of these things have helped with symptoms the bottom line is I still have MS. HSCT is a way to kill the MS and reboot my immune system.
While having contacted Clinica Ruiz in Mexico a while ago, I was just recently notified that I have been accepted and offered a transplant date of February 27, 2017. My sister Ellen will be accompanying me to Monterrey Mexico. I will need to stay there for 30 days and then recover another 30 days sequestered in my home, rebuilding my immune system. I have health insurance, good health insurance, but they cannot pay for a procedure that is not legal in the US yet. The cost of the procedure is $55,500. Ralph and I are mortgaging our house and figuring out what else we own that we can sell. My family has set up a Go Fund me page to try and help. Locally, a group of friends are helping to organize a fundraiser.
I am in contact with other patients from Clinica Ruiz who are at all stages of the procedure…pre, during and post-transplant. These people are amazing and to witness their journeys has been so inspiring and gives me so much hope. Hope to have my mobility back and to be back to work by May 1st. Raising the money for this procedure is not going to be easy but I am determined to get myself to Clinica Ruiz in Mexico. If you are able help in anyway please do, even just sharing this page is helpful. It is with the deepest gratitude that I thank you for reading this and for any help you are able to give. I am including a couple of links for you to watch: one is about the HSCT Trial that is currently ongoing at Northwestern University in Chicago and the other is a 60 minutes piece featuring an Australian woman whose post procedure outcomes have been incredible.