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.
Merry Christmas, everyone.
"Treatment with autologous hematopoietic stem cell transplant (aHSCT) led to a sustained decrease in disability and almost no clinical relapses in patients with relapsing-remitting multiple sclerosis (RRMS) who had failed to respond to prior immunosuppressive therapies."
These are the latest results from an Australian Phase 2 trial. This is clearly consistent with my own results. I can easily imagine HSCT available in the U.S. in just a few more years.
Here on the home front, things are still improving regularly. The swapping out of my Gralise (gabapentin) for Lyrica CR (pregabalin) has really turned into a great move.Add a comment
Today, I got the best news since I got my stem cells back.
It has now been 18 months since my last infusion of rituximab, which was my final "chemo" follow-up from the stem cell procedure. (My MS neuro considers that a DMT.) It has been almost 30 months since I got my stem cells back.
Yesterday, I had a brain MRI, the first one in a year. Today I got the results:
I'm sorry it's been so long since my last update. Clearly, a lot has happened since I last blogged.
I had my third C-spine surgery in April. It was a lot of trauma to endure for a small amount of pain improvement. I've since been to Stanford and Cedars-Sinai pain management clinics. I've had a new MRIs of my C-spine, and I've spent a lot of time enduring pain when I should just be able to live life.
I've switched medications from Gralise to Lyrica to Lyrica CR (continued release). Pain is still the most significant deficit in my daily life, but I did have some beautiful summer days with some decent relief. I think I can alleviate over half of my chronic, debilitating pain if I can get my non-MS shoulder problems figured out. I'm sure there's some MS-related pain in the upper-body region, but I'm uncertain as to how much each source plays off of the other.Add a comment
Well, it has been quite some time since I've last posted. This is mostly because there's been only status-quo, which has actually been mostly good. I still continue to heal very slowly.
I'm constantly reminded throughout the day by little things that I can do now, which I was not able to do a year or two ago. Things like extra strength in my legs, better muscle control, better balance, and more endurance give me plenty of positive reinforcement that I continue to improve.
You may recall that about six months ago, I wanted to start tapering down my daily dose of gabapentin. It's taken me this long, but I'm finally off it completely. Each time I cut the dose, I have to endure increased neuropathy for about a week. But eventually my body gets used to it, things settle down, and I generally feel better than I did at the higher dose.Add a comment
It's been a while since my last report. Oh, how life keeps us busy when we actually start to get our life back!
So let me just start by saying that I saw my MS neurologist last week for the first time in a full year. He performed a full EDSS evaluation on me. Then he went to jot the results down in his notes. Then he looked puzzled for a moment before he came back to re-measure my left leg (hip, knee, and ankle strength). "Wow," he said. "You're stronger."
Well, that almost brought a tear to my eye, even though I knew I was stronger. It's just that the last time he made a comment about my left leg was right before I decided that I needed to do something drastic. He said, "well, your left leg is definitely getting weaker." That's what brought me here to HSCT.
As if that wasn't enough of a gold star, he continued. He read off the medication list that the nurse had jotted down. "That's all? No MS medications?" I said no. "That's all," he repeated. "What about Rituxan? Are you still on that?" I told him my last tiny dose was six months ago. "And for pain?" he asked. "These numbers are correct?"