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Official Year 3 Update
I just returned from my 3-year check-up in Houston. Before I detail the results of my autologous (own) stem cell transplant at year three, 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. Officially stable MRI once again. I have had no relapses (after having several relapses in the nine months prior to the SCT). I continue to take no MS medication. In fact, no one treated at the Texas site has restarted any MS medications and all have seen improvements.
Walking ability. At year three, 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. While I use forearm crutches outside the home, I am using a single cane or zero aids inside. I often cook without aid and even carry baskets of laundry without walking assistance. I don't know if that is smart, however.
Dexterity. More improvements. The "peg" test times were in the 24-second range for my left hand and 25-second range for my right, a significant change from 28 seconds and the low 30s last year. Typing is much faster.
Cognitive. Tested with the PASAT (basically oral math), I duplicated last year's results. 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 once again and pooched one of the last numbers. I also have been doing the brain training games at Lumosity for the past year and rank in the 99th percentile for my age group, so missing even one makes me angry.
Fatigue. Still zero.
Balance. Again, this continues to surprise me. I often use no aid in the kitchen and chop/prep everything standing. Moving a pot of boiling water off the stove is not a problem. Lugging laundry to and from the bedroom is easy. I've had no falls.
Lower Body Strength. Aces. Going to the gym is helping.
Upper Body Strength. More aces and bigger muscles. Protein after exercising is helping in that department. My right side is still a smidge weaker than the left, but that might be from a prior shoulder injury.
Vision. 20/20 with glasses. Pretty much unchanged since month 6.
Bladder. About the same from last year. Urgency is a minor annoyance.
Numbness. For two years running, I've answered correctly the "is your toe up or down" test.
Overall. The doc said he bumped up my score again after my testing, so I bested last year's battery of tests.
My next series of tests will be at the four year mark. Immunizations are complete and I currently I am on zero daily prescription medications, same as last year. I take Viagra for complications from my low testosterone (although things work without such aid, just not as reliably) and pop the occasional half Ambien for sleep. Vitamin D (4000 IUs) is the only supplement I take.
So to sum up: More steady but gradual improvements. Nothing earthshattering, but noticeable nonetheless. Will my current gains hold? Will I see more gains by year 4? Fingers are always crossed.
As always I'll post more about further gains and any speed bumps as warranted.
Disease activity. Officially stable MRI once again. I have had no relapses (after having several relapses in the nine months prior to the SCT). I continue to take no MS medication. In fact, no one treated at the Texas site has restarted any MS medications and all have seen improvements.
Walking ability. At year three, 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. While I use forearm crutches outside the home, I am using a single cane or zero aids inside. I often cook without aid and even carry baskets of laundry without walking assistance. I don't know if that is smart, however.
Dexterity. More improvements. The "peg" test times were in the 24-second range for my left hand and 25-second range for my right, a significant change from 28 seconds and the low 30s last year. Typing is much faster.
Cognitive. Tested with the PASAT (basically oral math), I duplicated last year's results. 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 once again and pooched one of the last numbers. I also have been doing the brain training games at Lumosity for the past year and rank in the 99th percentile for my age group, so missing even one makes me angry.
Fatigue. Still zero.
Balance. Again, this continues to surprise me. I often use no aid in the kitchen and chop/prep everything standing. Moving a pot of boiling water off the stove is not a problem. Lugging laundry to and from the bedroom is easy. I've had no falls.
Lower Body Strength. Aces. Going to the gym is helping.
Upper Body Strength. More aces and bigger muscles. Protein after exercising is helping in that department. My right side is still a smidge weaker than the left, but that might be from a prior shoulder injury.
Vision. 20/20 with glasses. Pretty much unchanged since month 6.
Bladder. About the same from last year. Urgency is a minor annoyance.
Numbness. For two years running, I've answered correctly the "is your toe up or down" test.
Overall. The doc said he bumped up my score again after my testing, so I bested last year's battery of tests.
My next series of tests will be at the four year mark. Immunizations are complete and I currently I am on zero daily prescription medications, same as last year. I take Viagra for complications from my low testosterone (although things work without such aid, just not as reliably) and pop the occasional half Ambien for sleep. Vitamin D (4000 IUs) is the only supplement I take.
So to sum up: More steady but gradual improvements. Nothing earthshattering, but noticeable nonetheless. Will my current gains hold? Will I see more gains by year 4? Fingers are always crossed.
As always I'll post more about further gains and any speed bumps as warranted.
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