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Official Year 2 Update
I just got back from my 2-year check-up in Houston. Before I detail the results of my autologous (own) stem cell transplant at year two, I want to remind folks: 1) the purpose of HALT-MS is to stop disease progression, not reverse damage, 2) my experience may not be representative of all study participants, 3) HALT-MS included two major components: stem cell transplant and immune system ablation, meaning that one aspect or both could be responsible for my gains, and 4) MS is a disease that is unpredictable, so my gains could also, in theory, just be natural remitting.
Disease activity. My most recent MRI showed no new or enhancing lesions. I have had no relapses (after having several relapses in the nine months prior to the SCT). I continue to take no MS medication.
Walking ability. At year two, for the official test I logged over 500 meters again. My walking speed, tested over 25 feet, is about the same as it has been. Around the house I often use a single cane or sometimes nothing. When I'm out of the house, I use two forearm crutches. At year one my max was 45 minutes nonstop; it is now 75 minutes nonstop. My longest hike was 1.5 miles; it is now 2 miles. I only use my walker after exercise (legs need to recover), in the middle of the night (safety), when cooking (hot kitchen) or doing chores that require toting something (e.g., laundry).
Dexterity. I believe I improved in the "peg" test on my left hand, hitting around 28 seconds, but my right dipped a few seconds into the low 30s. Go figure, the reverse was true last year (and at the 6-month mark it was reversed again). My handwriting is getting better and my typing is much improved, probably at least 10-20 wpm.
Cognitive. Tested with the PASAT (basically oral math), I improved again. For background, I missed six questions at month six three at the one year mark, and only one at year two. I think I got excited toward the end and pooched, like, the last number.
Fatigue. Still zero.
Balance. This continues to surprise me. I'm walking and doing things standing without aid far more frequently and confidently. I put away dishes without thinking of holding onto something, a big change. I can walk for short distances on my heels and toes, and even do a grapevine walk and lunges, all without aid. I've had no falls, either.
Lower Body Strength. Solid and getting a little better. Nothing eye-opening at this stage.
Upper Body Strength. Still improving slightly.
Vision. 20/20 with glasses. Pretty much unchanged since month 6.
Bladder. This seems to be improved, and have had no major accidents over the past year. It might just be that I avoid coffee if I plan to be out on the town. And as an aside, I have had less constipation. More fiber in my diet?
Numbness. I've always failed that "is your toe up or down" test. Not this time—pegged it. The difference I feel isn't huge in my feet and legs, but it's there.
Overall. The doc said he was going to bump up my score after my stellar testing, commenting that my gait was better. (I failed to ask him about my EDSS score, sorry.)
My next battery of tests will be at the three year mark. I have one more round of immunizations. Currently I am on zero daily prescription medications. I take Viagra for complications from my low testosterone (I wanted to avoid hormone replacement therapy) and pop the occasional half Ambien for sleep. Vitamin D (4000 IUs) is the only supplement I take.
So to sum up: There have been noticeable improvements, but they've happened so gradually that I haven't really realized all the gains until I just typed them here. I don't expect to see too much change over the coming year (with this treatment, gains usually peter out around this time), but I hope my body surprises me.
As always I'll post more about further gains and any speed bumps. I go to Houston next month for a Month 25 MRI and will post any news from that when I hear the results.
Disease activity. My most recent MRI showed no new or enhancing lesions. I have had no relapses (after having several relapses in the nine months prior to the SCT). I continue to take no MS medication.
Walking ability. At year two, for the official test I logged over 500 meters again. My walking speed, tested over 25 feet, is about the same as it has been. Around the house I often use a single cane or sometimes nothing. When I'm out of the house, I use two forearm crutches. At year one my max was 45 minutes nonstop; it is now 75 minutes nonstop. My longest hike was 1.5 miles; it is now 2 miles. I only use my walker after exercise (legs need to recover), in the middle of the night (safety), when cooking (hot kitchen) or doing chores that require toting something (e.g., laundry).
Dexterity. I believe I improved in the "peg" test on my left hand, hitting around 28 seconds, but my right dipped a few seconds into the low 30s. Go figure, the reverse was true last year (and at the 6-month mark it was reversed again). My handwriting is getting better and my typing is much improved, probably at least 10-20 wpm.
Cognitive. Tested with the PASAT (basically oral math), I improved again. For background, I missed six questions at month six three at the one year mark, and only one at year two. I think I got excited toward the end and pooched, like, the last number.
Fatigue. Still zero.
Balance. This continues to surprise me. I'm walking and doing things standing without aid far more frequently and confidently. I put away dishes without thinking of holding onto something, a big change. I can walk for short distances on my heels and toes, and even do a grapevine walk and lunges, all without aid. I've had no falls, either.
Lower Body Strength. Solid and getting a little better. Nothing eye-opening at this stage.
Upper Body Strength. Still improving slightly.
Vision. 20/20 with glasses. Pretty much unchanged since month 6.
Bladder. This seems to be improved, and have had no major accidents over the past year. It might just be that I avoid coffee if I plan to be out on the town. And as an aside, I have had less constipation. More fiber in my diet?
Numbness. I've always failed that "is your toe up or down" test. Not this time—pegged it. The difference I feel isn't huge in my feet and legs, but it's there.
Overall. The doc said he was going to bump up my score after my stellar testing, commenting that my gait was better. (I failed to ask him about my EDSS score, sorry.)
My next battery of tests will be at the three year mark. I have one more round of immunizations. Currently I am on zero daily prescription medications. I take Viagra for complications from my low testosterone (I wanted to avoid hormone replacement therapy) and pop the occasional half Ambien for sleep. Vitamin D (4000 IUs) is the only supplement I take.
So to sum up: There have been noticeable improvements, but they've happened so gradually that I haven't really realized all the gains until I just typed them here. I don't expect to see too much change over the coming year (with this treatment, gains usually peter out around this time), but I hope my body surprises me.
As always I'll post more about further gains and any speed bumps. I go to Houston next month for a Month 25 MRI and will post any news from that when I hear the results.
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