Stopping in to say Hello and see what's been going on. I like everyone's comments, especially with my absolute full agreement with what Asher has said. If I knew then what I know now, and if it were available (it was not at that time), I would have had HSCT the day after I was diagnosed with MS. Asher's right that improvement (reversal) of accumulated disability is better when HSCT is performed earlier before more substantial symptomatic accumulation manifests. And if the underlying MS disease activity and progression can be stopped (which HSCT does in the vast majority of cases), it returns a predictable future for people. That alone was worth it for me going through the procedure. All of my symptomatic improvements have just been a bonus. But I'm not looking a gift-horse in the mouth. I'm happy (as eventually are virtually all other HSCT-for-MS recipients I have met).
Sincerely wishing everyone well!
HSCT curative efficacy statistics:
The early phase I HSCT clinical trials for MS focussed on treatment of severely disabled progressive patients that were primarily in the range of 6.0 - 8.0. Although the underlying MS disease activity can likely be stopped in this group, "improvement" of pre-existing sysmptoms is not spectacularly good. This is why today the clinical trials focuss on ambulatory episodic patients in which HSCT works best. Here is a general description of HSCT efficacy level based upon morphological disease type: As a general rule, treatment earlier in the MS disease lifecycle is more effective than later.
The specific statistical "probability" that has been demonstrated for each morphological evolution groups (RR, SP, PP) for halting of underlying disease activity is as follows:
Ealy RRMS-treated patients
Complete stopping of the disease process & progression in virtually 100% of treated patients.
81% of the same group experiences "significant" improvement (>1.0 point EDSS) reduction of existing symptomatic EDSS. Many HSCT-treated patients in this group report their symptoms completey dissappearing, 100%.
During the RRMS phase of the disease I would expect very good beneficial results following HSCT regardless of the EDSS-measured symptomatic disability at the time of treatment (highly effective in the entire EDSS range).
Late SPMS (non ambulatory) treated patients
Stopping of MS disease progression in 78% of patients in this group.
EDSS improvement not quantified in this population and varies by individual.
Curative efficacy is not population-quantified in other patient EDSS stratum. So for SPMS patients with an ambulatory status (EDSS <6.0), the cure rate (stopping of disease progression) is not well established, but certainly I would expect it to be greater than 78%. Probably in the range of 85% - 95%.
Just my own personal expeience data point (that does not necessarily translate to any other specific individual) that appears to be consistent and fairly representative of other (ambulatory) SPMS patients so far. . . . . I was RRMS for 11 years and then went SPMS for 4 years (EDSS 3.5) before my HSCT procedure. As of today (2 years post-transplantation) my disease is 100% stopped and my pre-existing symptomatic deficit (as measured by EDSS) has improved (reversed) 50%. So clearly it is possible that SPMS cases (especially those that are ambulatory) can experience good beneficial improvement from HSCT.
Late PPMS (non ambulatory) treated patients
Stopping of MS disease progression in 66% of of patients in this group.
EDSS improvement likely poor, if at all
So for the PPMS patients with an ambulatory status (EDSS <6.0), the cure rate (stopping of disease progression) is not well studied and not well established, but certainly I would expect it to be greater than 66% people in the PPMS population.
Also, for ambulatory PPMS cases, EDSS improvement is possible, but not gauranteed. This is a very un-studied and unknown area. I would expect this number of people in this poulation to show improvement somewhere in the chasm-like range of 1% - 65% of treated patients. Perhaps someday as more ambulatory PPMS patients are treated then this can be better quantified. For now, the treated population is so small its impossible to predict with any confidence.
But no matter what, HSCT has a far better chance of having a positve beneficial effect for MS patients of any type as compared to any (every) other therapy anywhere in the world. So far, no other curative therapy can even come close in accomplishing what HSCT has already (scientifically and repeatably) demonstrated.
Here is a single graph that I created that provides a comparative overview of all the aforementioned data:http://2.bp.blogspot.com/-PvejGH-NIG4/T ... al%2B2.jpg