Kim’s MS Story

I was looking forward to a fun weekend, waking up in Bolivia on the adventure of a lifetime! I was 45 years old, happy wife, busy mom of 2 teenage boys and had just embarked on our crazy dream of moving to South America for one year to help our missionary friends with opening an orphanage. On a normal/busy Saturday morning, only one month in our new country, I woke up and couldn’t feel my legs! They were both numb and unresponsive! I thought that I had pinched a nerve. August 5, 2013, is now the line in the sand between the before and after of life with MS. It took 6 months of numbness with nerve pain moving up the right side of my body, and 2 unexpected trips back to the US to get a diagnosis, April 2014. (Now, I need to add that I had a few ‘weird’ symptoms many years prior that I ignored because they went away quickly, such as numb tips on my fingers and toes, trembling right leg after exercise, and a weird episode of sprayed sunscreen hurting that same leg.) So, with a startling diagnosis, very little research and complete trust in my doctor, I immediately began taking Tecfidera to stop new lesions. In 5 years (with big moves from Bolivia, to Australia, now New York), the drug was successful with no new lesions, but I have experienced a slow progression towards disability. My new normal is consumed with carefully scheduling every moment of my day, rationing my energy, and deciding which walking aid I will need to keep doing LIFE, one day at a time! Due to the fact that tomorrow is a mystery, I decided to get healthy and drastically changed my diet and began a daily strength and exercise routine that made me feel better but didn’t stop the progression. Then a friend mentioned an article about a stem cell treatment that was working for some patients with MS and I started researching like a madwoman! After 2 years of obsessive research, prayer, conversations and continued slow decline, Mike and I decided that HSCT is the best and only option to stop MS in its tracks. There are risks, unknowns, and anxious moments, but we are focused and ready to take the chance on a bright and active future!

What is HSCT?

The patient’s bone marrow is stimulated with medication to produce millions of extra stem cells. Stem cells are basically blank cells that have no identity yet. These stem cells are harvested via apheresis procedure. The patient then undergoes high-dose chemotherapy to almost completely knock out the immune system. The stem cells are then reinserted back into the patient to grow a new immune system, one that has “forgotten” it has an autoimmune disease. Basically, it’s a re-boot of the immune system. Incredible! HSCT has been shown at worldwide sites to be up to 85-90% effective in halting the disease. It stops progression of MS in its tracks! That is something no medication has been able to do. It’s also a one-off treatment. One time and you are done! No, it is not an easy procedure and some might consider it extreme at first. But when you start to research it you quickly realize it makes complete sense. A side note here-HSCT is not a new procedure. It has been used to treat many types of cancer for 30+ years. However, the application to autoimmune diseases is fairly new, only in the last 18 years or so. The other thing about HSCT is the sooner you have it done in the disease process the better. The idea is to stop the disease before too much damage is done. HSCT will halt the disease, not repair damage. However, many people do have reversal of symptoms if caught early enough because the body always wants to heal itself. (copied from blog by Kathy Carr http://www.ktcarrblog.wordpress.com/)

The bad news is that HSCT is not currently FDA approved for MS treatment in the United States. Although, several trials are currently in progress in the US, it will be several years before they are available. So, after much research we decided that Clínica Ruiz in Monterrey Mexico had the best and safest treatment plan for me.

OUR PLAN:

On September 14, 2019, Mike and I will fly to Monterrey for the 28 day treatment. We will stay in an apartment that is provided at the clinic and we will have bi-lingual drivers, nurses and a team of multi-disciplined doctors providing 24 hour care (Mayo clinic HSCT award recipients). Mike will be working remotely while continuing to be my knight in shining armor caregiver! At the completion, Oct. 12, we will fly to New Braunfels, TX, surrounded by family, while I am recovering and building my new immune system. The plan right now is to return to New York in mid December, but time will tell.

Mike plans on giving updates along the journey on this blog so please subscribe if you want to follow along! Our greatest treasure is your encouragement, prayers, and friendship that surrounds us and lifts us up! We are at peace with this plan and know that God is good and we hope to bring glory to Him wherever this journey leads.