FLJhawk wrote:This is all interesting.
I am recently diagnosed at age 56 and have relatively "mild" symptoms still and I want to do what I can to keep them mild! I am considering the non-myeloablative treatment with Dr. Slavin, along with CCSVI. My thoughts are to do CCSVI next month to ensure my veins are ok (but no stents or large diameter balloons - I want to keep things very conservative and not do any damage) and then do the stem call thing. I am hesitant to do the chemo treamtent as it is so expensive and I don't think I am advanced enough to get the treatment. Indeed, I contacted the folks in Germany and they said I wasn't bad enough to treat, so I will have to trust that judgment for now. With the hope the non-myeloablative will stop my progression, temporarily at least, I will consider the myeloablative treatment (chemo) at a later date when it becomes more mainstream.
I hope this plan seems reasonable.
CVfactor wrote:I wonder way there are no trials strictly for PPMS. It seems that there are no other alternatives for this type of MS. If the research indicates that the disease is stopped in 2/3 of PPMS this seems like a viable solution. Why is it up to these doctors who they will and wont treat?
CVfactor wrote:I guess from my point of view this type of research should be investigated and funded by organizations in which the private sector would not be interested because of a limited return on investment.
Definetely The National MS Society and the NIH would fall into this category, so I don't understand what their purpose is anymore. When I used to give to TNMSS before I became sick I truely believed they were trying to help people with MS, but it seems they have really lost their priorites. Now we have fast tracked CCSVI investigations which goes against all accumulated MS science which is a outrage.
Now we have fast tracked CCSVI investigations which goes against all accumulated MS science which is a outrage.
FLJhawk wrote:Now we have fast tracked CCSVI investigations which goes against all accumulated MS science which is a outrage.
You cannot deny that CCSVI has helped, even if temporarily, a lot of people. Also, there is a huge demand for it to be investigated, and these societies have to listen to their membership. CCSVI is most likely not a cure for most people, but the fact people get better (even if for a few months or a year) would seem to be providing a huge clue regarding a true cure.
CVfactor wrote:For the CCSVI proponents I would ask that you take your opinions back to the CCSVI section.
As far a re-acquiring MS after HSCT (BEAM) your maximum odds would be the same as that if you were an identical twin with one twin having MS which is 30%.
However this value would only hold true if you re-experienced every immune system challenge in the same sequence as you initially did when you first acqured MS. The likelihood of this happening again would be very small.
Users browsing this forum: No registered users