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

33.5 Months

clock

Yesterday’s rituximab infusion was a little more difficult than I expected. A few of us needed multiple shots of steroids to combat the side effects. After a half-hour in, my head turned splotchy red, and I couldn’t stop itching my ears, throat, scalp and face. I was light-headed. One girl started getting a blistery, red rash on her scalp and neck. Another’s tongue and throat started swelling. In came the nurses with hydrocortisone shots injected right into the infusion portal, and within a minute or two, like magic, there was relief for everyone. Suddenly, we all looked and sounded normal again. Then I passed out for probably 30 minutes. The infusion lasted a good 3 hours.Yesterday’s rituximab infusion was a little more difficult than I expected. A few of us needed multiple shots of steroids to combat the side effects. After a half-hour in, my head turned splotchy red, and I couldn’t stop itching my ears, throat, scalp and face. I was light-headed. One girl started getting a blistery, red rash on her scalp and neck. Another’s tongue and throat started swelling. In came the nurses with hydrocortisone shots injected right into the infusion portal, and within a minute or two, like magic, there was relief for everyone. Suddenly, we all looked and sounded normal again. Then I passed out for probably 30 minutes. The infusion lasted a good 3 hours.

The administrator and pharmacist came around to each patient to settle up tabs for any extra medication we may have used during the treatment period. Our treatment bags included a sack of medication typically unneeded but available in case instructed to use. Most of us needed one goody or another in there.

We were given our discharge packets, which included six-month prescriptions for Bactrim and acyclovir to minimize the chances of infection while our immune systems reconstitute. And we were offered the ability to buy all those meds right there. So now I’m going home with about 30 boxes of medication. I need another suitcase.

I guess I could have tried to get my insurance company to pay for the prescriptions in the USA, but they didn’t approve this procedure, so it would probably be an uphill battle. Even if they did approve the medication, I would still have copays. The total cost of the take-home pills in MX was about $450, which I gather is less than half of what they would cost in the USA. I have a receipt, so I will try to get some reimbursement.

Last night I slept 11 hours. My MS pain is back at pretty high levels, so it’s nice to have a couple of lazy days before I return home on Saturday. Other than that, I feel pretty normal. The course of treatment is complete, save for five more half-dose rituximab infusions over the next year (and regular blood tests). In a year, I will have a normal immune system ???? No more DMTs!
I’m looking forward to some pain and disability improvements over the months to come, and I’ll document them here.