I know this makes me sound dumb as I am an MS, maybe Devics, world. I have been really looking into CSSVI treatment, but have heard lots of stuff about cutting edge stem cell infusions/therapies that have promise. Where is the best place to research the treatments, and do major insurance companies pay for these types of treatments? Just how expensive are they?
Where would one go about following up on these types of treatments? They seem as new or newer than cssvi treatment, and some of the stories are just as miraculous.
Any advice would be great, and I would really like to look into this as a possibl treatment option.
I'm not a "super" active participant in this forum, but I do like to remain somewhat up-to-date regarding applications of stem cells for curative treatment of MS. Additionally, I personally don't think that anyone has any dumb questions regarding this subject. More information is always better than less.
With that said I will provide my own feedback that I personally think is strongly rooted in reputable science. There may be others with a different view, which is totally fine with me. So if needed, I am willing to back up my statements with documented scientific sources.
Here's a very brief overview of the subject matter you bring up (my apologies if this seems curt). . . . .
CCSVI treatment for MS is junk science and has no efficacious benefit. Likely any benefit seen in any individual is either just cooincidence (remitting episode) or a placebo effect. I'm not going to engage in an argument on this forum on this subject. That should be taken up on in the CCSVI forum. I have heard of people receiving this treatment overseas with a cost in the general range of $15K - $30K.
Stem cell "infusions" (without the use of chemotherapy) also have no demonstrated reproducible curative benefit. However, as opposed to CCSVI, infusion treatment with stem cells does have a very prolific foundation of in-vitro (test tube) results and looks very promising for producing future clinical benefit. However, today there is not a single demonstrated "reproducible" benefit for any type of stem cell infusion treatment for MS. However, I personally support more research in this area because the laboratory studies are showing some very promising things happening at the cellular level, but have not yet demonstrated a single clinical benefit that can be scientifically-verified. This is why the US FDA does not allow such medical procedures in the US (yet) but you can find many facilities overseas providing such unregulated & unsubstaniated treatments that are just scamming people out of money. I really hope these treatments will someday show benefit. Unfortunately not quite there yet. I have heard of people receiving this treatment overseas with a cost in the general range of $25K - $40K.
Hematopoietic stem cell transplantation (HSCT). . . so far this is the only scientifically demonstrated & confirmed treatment that has unequivocally shown curative benefit for multiple sclerosis (and other hematologically-rooted autoimmune disorders). HSCT is a very established medical protocol and has been done since the 1960's for cancer treatment and has been done since the early 1990's for treatment for MS (and other autoimmune diseases) which is in final phase III clinical trial here in the US. So it is a very well-established treatment. HSCT treatment utilizes necessary chemotheraputic agents to stop the underlying MS disease activity prior to the re-introduction of one's own stem cells to reboot the immune system, thereby stopping the MS disease progression. Another way to look at this is no chemotherapy = no cure. US clinical trials are running in the range of $150K - $210K. I received my own HSCT treatment outside of a clinical trial for approximately $75K in Germany. I compiled documentation describing the fundamental science of HSCT in more detail. . . .
http://themscure.blogspot.com/2010/06/s ... rence.html
Last note. . . you are correct in that few (if any) insurance companies will pay for HSCT. That would need to be paid out-of-pocket. At least until the pase III clinical trial is complete sometime around, or just following 2020. However, HSCT is still the only treatment today that has been scientifically-demonstrated to show curative benefit for stopping (and reversing) the underlying MS disease activity. So it is up to each individual to decide for themselves how much a cure for MS is worth.