Mission Statement

This website documents one man's quest to cure his MS through determination, perseverance and a little luck.

Although harsh drugs and strict diet were successfully supressing my devestating MS relapses, disease progression was quickly deteriorating my ability to walk and slowly deteriorating my ability to think. The logical solution for me was to try HSCT, which is not FDA approved, so I left the country to do it. This website documents my research and journey to effect a cure.

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Two days ago, at about +7.5 weeks, I woke up with no pain. That was pretty well sustained throughout the day. That night I had one of my friends help me pickup a used treadmill that I found on Craig's List. This was a NordicTrack in excellent condition, only six months old and still under warranty, yet 50% off. Score.

 

I've been walking on the treadmill to monitor and analyze my walking. It's great having a flat, consistent surface, and using the handrails is like having a “walker.” Perfect. I can see now that during my left leg's forward swing, my foot slightly drags on the floor. This is generally referred to as "drop foot," but now I can see precisely what that means. That's why I stumble so frequently; it only takes a small pebble or sidewalk crack in just the wrong place. I'm working to address this, which is generally considered impossible without HSCT, but it is unbelievably difficult, nonetheless.

Back to the pain. My body seems to have acclimated to the higher dose of carbamazpine (700mg, tegretol), and I think that's one reason for my significant pain level drop. But I also think something else is going on. I'm pretty sure the stem cell transplant is at least partly responsible. Yay! This doesn't mean I'm ready to adjust my meds quite yet, but that would obviously be the next step.

On Monday, I start back up with physical therapy. I'm really looking forward to this. As one “stemmie” said, the meter's ticking. Typically, we only get about 18 months to reverse symptoms. The bulk of that usually begins in 12 months, but it can happen sooner for some people.

On Wednesday, I have my second appointment with my new hematologist, Dr. Penn, here in Santa Barbara. I'll get a new blood test on Monday, and we'll see how my white blood cell count is coming along.

Unfortunately, Anthem denied my request for five infusions of rituximab over the next ten months. They say that it's considered experimental for my requested type of use. The hema and neuro will have to strategize on how to respond. In the meantime, this means that I'll be headed back to Mexico for my next dose around August 15th. Instead of flying all the way back to Puebla, I'm trying to find a place in Tijuana that can do the treatment. Puebla would be a three day, two night trip for only a two hour treatment. Tijuana would be just one 14-15 hour day. If I manage to get it all set-up somewhere in Tijuana, I will report this back to the stemmie group on Facebook, where several other patients like me will be happy to have a closer clinic.