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Official Month 6 Update
Before I detail the results of my autologous (own) stem cell transplant at month six, I want to make a few things clear: 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. Heck, that is why this is a clinical trial, not gospel. Okay, that said, here's the latest. Sorry it's a bit long but I have lots to cover.
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). Interestingly, my brain MRI at month two did show some activity, but that likely occurred in the MRI-free window prior to the treatment. I'm glad they didn't tell me until now or I would have been freaked.
Walking ability. This disease gimped me up pretty good after a January relapse. Prior to treatment, I could barely eke out 100 meters unaided. Post treatment I have done as much as 500 meters. For the official test, I logged 235 meters, still a big improvement. (It should be noted that my rehab was interrupted for a couple months with a broken leg.) My walking speed, tested over 25 feet, has also increased substantially. Currently it is about 5.5 seconds. Since I don't trust my balance (see broken leg), I still use my walker in the house and usually my forearm crutches when I'm out and about.
Dexterity. Again, there was a noticeable improvement in the "peg" test. I was in the 27 second range, better than the 33+ second range pre SCT. My handwriting, which had fallen off the cliff, is vastly better. I can write again and my signature is normal messy instead of an X.
Cognitive. Tested with the PASAT (basically oral math), I improved markedly. Even though I aced my math SATs, I've never gotten 100 percent in this relatively easy test. I missed six question (still makes me mad), but again that beat out the pre SCT of over 10 misses. And on a personal note, the quick-thinking jokes that used to come so easy to me are mostly back. I feel sorta witty again!
Fatigue. I'm a strange bird in this department. Other than a couple weeks of feeling sluggish, there's been zero. But I had almost no fatigue before the SCT, either (except for during relapses when it is crushing).
Lower Body Strength. This I did on my own and the results have been startling. Lower body strength increased more than 100% when compared to baseline. Calf, thigh, hamstring, you name it. In fact, tests that were hard immediately after my relapse, and modestly challenging pre SCT, are now too easy for me to gauge recovery more accurately than "better than 100%." I can now stand to brush my teeth, make coffee, cut veggies, mix cocktails, and shower. These were all mandatory sit jobs pre SCT.
Upper Body Strength. I didn't lose much strength due to the relapse, so prior to the SCT my baseline was pretty high. Even so, at month two I was up maybe 10%. But in a test yesterday, the gains were significant to the pre-SCT me: 25-50% across the board. Chest, biceps, shoulders, back, forearms... all were up.
Vision. When I get overheated, it used to get wonky. It still does, but recovery is much faster and hot foods don't trigger it as much, either.
Bladder. Urgency is down. Retention has decreased. I can now sleep through the night without having to get up two or three times.
Numbness. I've had this problem in spades. I'm basically fuzzy neck down. Pre transplant I couldn't tell where my feet were when I was lying in bed on my side. Was my foot on top of the other foot? In front? Behind? Now I know.
Overall. The median EDSS change for the study is zero (from early data only), but I have lost a half point, dropping from a 5.5 to a 5.0. If I had walked 500 meters, it may have dropped me to a 4.0. (For the record, a fellow study participant had a loss of 2.5 points I believe, which is super cool.) To my knowledge, no one in the 24 has seen EDSS levels go up and MRIs have been clean for the most part.
My next battery of tests will be at the one year mark, at which time I'll start to get immunizations. Also, although I am officially past the riskiest part of the SCT, I will continue to take both an anti-viral and antibiotic for the next six months.
So to sum up: so far so good! Every department has seen improvement (including, ahem, that department only my wife is privy to). I'll post more about further gains and any speed bumps as the months tick by.
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). Interestingly, my brain MRI at month two did show some activity, but that likely occurred in the MRI-free window prior to the treatment. I'm glad they didn't tell me until now or I would have been freaked.
Walking ability. This disease gimped me up pretty good after a January relapse. Prior to treatment, I could barely eke out 100 meters unaided. Post treatment I have done as much as 500 meters. For the official test, I logged 235 meters, still a big improvement. (It should be noted that my rehab was interrupted for a couple months with a broken leg.) My walking speed, tested over 25 feet, has also increased substantially. Currently it is about 5.5 seconds. Since I don't trust my balance (see broken leg), I still use my walker in the house and usually my forearm crutches when I'm out and about.
Dexterity. Again, there was a noticeable improvement in the "peg" test. I was in the 27 second range, better than the 33+ second range pre SCT. My handwriting, which had fallen off the cliff, is vastly better. I can write again and my signature is normal messy instead of an X.
Cognitive. Tested with the PASAT (basically oral math), I improved markedly. Even though I aced my math SATs, I've never gotten 100 percent in this relatively easy test. I missed six question (still makes me mad), but again that beat out the pre SCT of over 10 misses. And on a personal note, the quick-thinking jokes that used to come so easy to me are mostly back. I feel sorta witty again!
Fatigue. I'm a strange bird in this department. Other than a couple weeks of feeling sluggish, there's been zero. But I had almost no fatigue before the SCT, either (except for during relapses when it is crushing).
Lower Body Strength. This I did on my own and the results have been startling. Lower body strength increased more than 100% when compared to baseline. Calf, thigh, hamstring, you name it. In fact, tests that were hard immediately after my relapse, and modestly challenging pre SCT, are now too easy for me to gauge recovery more accurately than "better than 100%." I can now stand to brush my teeth, make coffee, cut veggies, mix cocktails, and shower. These were all mandatory sit jobs pre SCT.
Upper Body Strength. I didn't lose much strength due to the relapse, so prior to the SCT my baseline was pretty high. Even so, at month two I was up maybe 10%. But in a test yesterday, the gains were significant to the pre-SCT me: 25-50% across the board. Chest, biceps, shoulders, back, forearms... all were up.
Vision. When I get overheated, it used to get wonky. It still does, but recovery is much faster and hot foods don't trigger it as much, either.
Bladder. Urgency is down. Retention has decreased. I can now sleep through the night without having to get up two or three times.
Numbness. I've had this problem in spades. I'm basically fuzzy neck down. Pre transplant I couldn't tell where my feet were when I was lying in bed on my side. Was my foot on top of the other foot? In front? Behind? Now I know.
Overall. The median EDSS change for the study is zero (from early data only), but I have lost a half point, dropping from a 5.5 to a 5.0. If I had walked 500 meters, it may have dropped me to a 4.0. (For the record, a fellow study participant had a loss of 2.5 points I believe, which is super cool.) To my knowledge, no one in the 24 has seen EDSS levels go up and MRIs have been clean for the most part.
My next battery of tests will be at the one year mark, at which time I'll start to get immunizations. Also, although I am officially past the riskiest part of the SCT, I will continue to take both an anti-viral and antibiotic for the next six months.
So to sum up: so far so good! Every department has seen improvement (including, ahem, that department only my wife is privy to). I'll post more about further gains and any speed bumps as the months tick by.
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