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.

Time Since Transplant

35.3 Months

clock

Many of us managed to sing right through neutropenia. Yesterday, Dr. Ruiz-Argüelles told me that my white blood cell count was 26,000. A normal count is 12,000. At first, I thought he had made an error through some English-Spanish miscommunication, but then in the clinic lobby, I found someone else from Australia who had reached 42,000.Many of us managed to sing right through neutropenia. Yesterday, Dr. Ruiz-Argüelles told me that my white blood cell count was 26,000. A normal count is 12,000. At first, I thought he had made an error through some English-Spanish miscommunication, but then in the clinic lobby, I found someone else from Australia who had reached 42,000.

So, later today, we are onto our final leg of the treatment, an infusion of rituximab (Rituxan, 350mg) to kill off any autoimmune-active B-cells (CD20 B-cells) which may have survived the chemotherapy. After all, this was a non-myeloablative procedure, so in exchange for some important, decreased risk, we didn’t completely deplete the immune system. In fact, the clinic recommends that we receive six total over the next year (five additional 100mg rituximab infusions, bi-monthly). Because of cost, I’ll probably return to Mexico for the followup treatments.*

Except for the hair loss, my body seems to have returned to how I was before treatment. Although during chemotherapy, my MS pain levels had dropped significantly, they seem to have unfortunately returned to pre-procedural levels. That’s kind of a bummer. But during my meeting with the doctor yesterday, he said that although some people start to notice improvements right away, most will not until 12-18 months after the procedure.

If you search for them, there are several videos of HSCT veterans showing improvement right around Day +9 to +11: people with joyous tears in their eyes are suddenly walking better. I’ll need to be more patient. Right now, my right calf nerve is painfully burning like it’s on fire.

Technically, I am free to return home tomorrow, but our flight doesn’t leave until Saturday morning. We have accommodations here until then, and we’ll probably forego the couple hundred bucks it will cost to change our tickets, so we’ll probably just leave as originally scheduled.

This four-week journey is coming to a close. It’s a little surreal to think I actually left the country and completed this thing! I suspect it will be a monumental cornerstone in my life.

* 100mg rituximab infusions at Clínica Ruiz cost roughly $500, which is probably 30 times less than getting one in the USA. According to my regular neurologist, my insurance company is unlikely to pay for them, so I’ll probably return to Mexico.