My MS Story and HSCT Discovery

In July 2015 at the age of 28, I was driving my car on a bright sunny day when I realized after trying to clean my windshield for the 10^th time that the windshield wasn’t dirty, it was my eye that was making it look foggy and blurry. That night I went to urgent care convinced that I had damaged my retina the night before while we were playing with a high-powered laser pointer. The doctors didn’t see any damage to my eye and told me to call an ophthalmologist in the morning if it wasn’t any better. They sent me home with information on Optic Neuritis. That started the 2-month runaround bouncing from specialist to specialist all saying the same thing. There was no damage that could be seen on my eye and that the laser pointer was simply a coincidence. By August I was starting to look more into what optic neuritis was and everything I read pointed towards Multiple Sclerosis. Before this research I knew little to nothing about what MS was. I thought I was too young to have a diagnosis like this. I thought I was too healthy to have a life long progressive disease. My first MRI was ordered and we were shocked when we saw the report that my brain scan showed “too many to count” active lesions. That is, active damage being done in my brain. My diagnosis of Relapsing Remitting Multiple Sclerosis was confirmed in September of 2015 after the specialist saw my MRI scans along with my only symptom, blurry vision. My immune system was attacking the myelin-the protective coating-around my nerves and by some grace of God, despite all of the damage that had been done to my brain and was continuing to wreak havoc, it was only effecting my vision.

I immediately started taking Disease Modifying Drugs (DMD) to slow the progression. My specialist told me that every single person with MS has a different and unpredictable disease course but from looking at my MRI, he would guess that my course would be a rapidly progressing one. DMDs offer no relief to symptoms and can only hope to slow down disease activity. I was okay with this for a while until I kept reading stories on support group forums about this treatment called Hematopoietic Stem Cell Transplant (HSCT) kept coming up and people were really fired up about it. The National MS Society kept deleting posts about it on their facebook page so I knew something interesting was going on with this treatment. After joining different facebook support groups and lurking for months among the forums, I realized that this was my best bet at not just slowing my disease progression but actually stopping it.

So what is HSCT, you ask? Let me give you my “I’m not a doctor but I’ve spent countless hours researching this treatment” answer. HSCT is a treatment that has been performed around the world and the USA for over 40 years to treat blood cancers like lymphoma and leukemia as well as Auto Immune diseases. It uses chemo therapy to destroy your faulty immune system that thinks it needs to attack your nerves. Without chemo, the treatment would not be successful. This is more of a chemo treatment than a stem cell treatment. Once your immune system is depleted, your own stem cells previously taken from your blood and stored are reintroduced to you to help rebuild a brand new immune system that lacks the memory of it’s old destructive behavior. This is not an experimental treatment. Doctors perform it every single day with great success rates! There is a major clinical trial happening in Chicago, IL that is showing consistent success in halting disease progression and even reversing damage if done soon enough into your diagnosis, which I am!

Almost 2 years to the date of my diagnosis, I am taking matters into my own hands and refusing to wait around to see how fast and how bad my disease progresses. I’ve got too much to lose to just hope to slow this monster down. I want it stopped.
I arrived in Monterrey, Mexico on September 10 to begin my journey to recovery. I applied to receive treatment through Clinica Ruiz which is headed by Dr. Ruiz Arguelles and Dr. Gomez-Almaguer. Dr. Ruiz studied at the Mayo Clinic in the US and was named one of the top 50 alumni. He is a world-renowned hematologist and oncologist and his passion is evident. MS is a scary and unpredictable disease and even if I am in the unfortunate 20% of “non-responders” I will be able to rest easy knowing I tried the only thing scientifically proven to halt disease activity. A scenario I’ve heard from many HSCT warriors goes a little something like this: “You are tied to a railroad track with a train approaching. You have a button in each hand, one will slow down the train and one will stop it. Which button will you push?” I don’t know about you, but I sure as heck am going to stop that train from running me over! That is why I am choosing to undergo this treatment. I will be in Mexico with a paid carer as my nurse who will stay with me in a 2 bedroom apartment for a little less than a month before I come home and begin my recovery and rebuilding journey.

I invite you to follow along as I embark on this life changing journey of saying “Adios” to my MS.