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.
Week +16, Day +112. I'm almost a third the way through the approximate 1-year procedure recovery. Here's an assessment of my progress so far:
First off, it's absolutely fabulous to be able to eat fresh foods again (i.e. fruit and salad) and to be able to eat out in restaurants. That has made me feel better mentally. I've also started consuming lots of different types of probiotics.Add a comment
I visited Dr. Penn (hematologist) last week, and she said that my neutrophil count was now normal. That means three huge things: 1) I can eat fresh foods like fruit and salads, 2) I can eat live foods like probiotics and sushi, 3) I can eat out (like at restaurants). This is a big deal, as you can imagine, and I'm very excited about it.Add a comment
In the wake of generally decreasing pain, I decided yet again to attempt to decrease my daily pain medication, which consists primarily of anticonvulsants (carbamazipine and gabapentin). I long ago ditched the opioid variety of pain relief, which is associated with addiction and dose tolerance, primarily because they don't work well over extended periods of time for the type of pain I experience.
As you might recall, in the wake of my HSCT, I started to experience an increase in neuropathic pain. I asked my neurologist if I could increase my daily dose of carbamazipine (then 400 mg) to offset it. I ended up at 700 mg/day, which offered me some great relief, but it has been difficult to tolerate the higher dose.Add a comment
Last week I had my first followup infusion of rituximab, this time the actual brand name, Rituxan. Since before I left for Mexico, I had been stressing about how I was going to do my five followups.
Obviously, it’s quite inconvenient and expensive to have to return to the southern part of Mexico bimonthly, especially considering my restrictive diet and special sanitary needs. Furthermore, I would need someone to accompany me for at least this first one. It was such a relief to have found a local doctor and facility to administer the drug. Cash on the barrelhead, the total was $1830. Excluding travel and lodging costs (a two night stay), the Mexico price was last estimated at about $500. By next time, my request for financial aid directly from Genentech may have been processed for some sort of discount, considering my insurance company has declined to pay.Add a comment
One of the things I have been stressing about the most since returning home from treatment is how I was going to be able to do my five follow-up rituximab infusions. These are available at Clínica Ruíz for about $500 USD. The problem is getting back there. The infusion is a little harsh on the body, so it's not unwarranted to travel there with a companion. Travel is a full day each direction, so that means staying two nights in Puebla, with the infusion in the middle. Add this all up, and it's not only inconvenient for a 1-2 hour process, it's also a bit expensive.Add a comment