I am writing this to answer an e-mail that I received yesterday. In the stated mail the person with MS asked me about my experience with the HSCT I had in Israel in late 2006-early 2007, and with his consent I decided to publicly answer his questions.
I had the non-myeloablative HSCT at Hadassah hospital in Jerusalem, so I cannot say anything about the procedure in CTCI center in Tel Aviv. As far as I understand, such a procedure no longer can be done at Hadassah outside the clinical trial (at least that’s what Steffi wrote on this forum)– I do not know the exact reason why is this so, but I am almost certain that it is because Prof. Slavin no longer works at Hadassah, now he works in CTCI in Tel Aviv. In one of my previous posts on this forum I said something about the level of education and skills that Prof. Slavin has, and I also mentioned that the price of the procedure at Hadassah was 77.000$. I do not know what is the cost of the procedure in Tel Aviv.
In his blog and on this forum George Goss already gave lot’s of information about the main differences between the myeloablative and non-myeloablative HSCT, in addition I can say I like to use the phrase “smarter rather than stronger” to describe in general the difference between those two approaches. The reason why I choose non-myeloablative procedure was because I witnessed some unpleasant experiences with myeloablative procedure, but on the other hand, in those times the procedure was performed in a more brutal manner than the one George experienced.
In fact, my experience was not so hard except on some occasions, for example I remember that cyclophosphamide was very unpleasant. Most of my problems appeared 1-1,5 years after the procedure, I had an intense herpes zoster and a nasty urinary infection, but everything turned out well in the end.
Now, 4,5 years after the procedure my EDSS improved by 2 points (I was 6.5 before the procedure), though it is hard to asses my real EDSS because my leg is 3cm shorter due to the nasty fracture (a completely healthy individual with a leg that is 3cm shorter limps, imagine how is it to walk for somebody who has balance problems), so I walk longer distances with crutches – I can walk more than a mile without stopping. But in some areas I experienced almost incredible improvement, for example I am continually improving my strength – can do up to 1000 push-ups per day, can swim one hour with only occasional small breaks. And of course, ever since the HSCT I am completely drug free. What excites me the most, I am positive that my general condition will continue to improve, I just feel it!