Disclaimer: The purpose of my comment is not to promote a certain person or idea. This is how I ended writing on this forum: When I was thinking about HSCT five years ago I came across two sites which were very useful to me:
http://www.ctv.ca/CTVNews/WFive/2005020 ... ms_050203/
My greatest admiration for all the people that went through this and for those that are still in this project – if I am not mistaking, somebody on this forum is in this procedure? And of course, thank you John McCleary (the guy who died in this project), every now and then I think of you, best wishes to you in heaven.
This is an experience of Craig Garisson - this is how I discovered George Goss site: One evening two months ago I was on the internet and was wandering what happened to that guy Garisson after 2003. Then I typed “multiple sclerosis Craig Garisson” and one of the first sites that appeared was one created by George Goss, in which he mentioned this guy Craig. Then I noticed that George in his blog did not mentioned the possibility of doing the non-myeloablative HSCT outside clinical trials and decided to let him know that such an option exist. Consequently, he posted my mail here. I am writing all this so that nowbody would get the impression that I am trying to promote either this procedure or Prof. Slavin. But let us get back to my story:
In short, I was diagnosed with MS in 2002, and upon trying all sorts of medication (Rebif, Novantrone, steroids) was in such a shape that sometimes was barely able to walk with two crutches. By 2006, the idea of HSCT was already deep inside me, but no neurologist that I met knew nothing about it. Then fortunately I was introduced to a neurologist who knew much about MS, and was also acquainted with the attempts to stop MS with SHCT. She told me that this procedure is available outside clinical trials only on few places in the world, and among them in Jerusalem. She also told me that I should be aware of the fact that this procedure carries certain risk and that maybe it will not work on me, because in my case the irreversible damage already occurred.
But I decided that I have to do something with my condition, and if it does not work, at least I tried. Upon initial contacts with Prof. Slavin via mail, I came to Hadassah Hospital in Jerusalem. Prof Slavin looked at my MRI’s, my medical history and examined me, and told me:
“OK. boy, I am telling you this honestly, if we do the HSCT in your case it might not work due to the irreversible damage. I also notice that your latest MRI does not show any new lesions, and this may also be due to the fact that your disease entered the neurodegenerative phase. But this can also be because you were receiving Novantrone in the last 6 months prior to your arrival. It is up to you, but I am not promising anything”.
But I was determined I want to do this, so I took my chances. The procedure was not an easy one, though it cannot be compared to the myeloablative protocol. I still remember that cyclophosphamide shit (sorry for the term I used, but I cannot help myself) in my body, and I thought of all those people that have no option but to receive much more of this medicine. All in all, my HSCT went well and I returned to my country.
Today, more then four years from my HSCT I still walk with two crutches (though I strongly believe I could walk with one if it was not for my aitch bone fracture (steroids, be careful with them) – due to this, my left leg is 3 centimeters shorter then my right leg, so even a completely healthy person would experience difficulty walking in that situation. Some of the things did not improve at all, for example tremor in my hands – but the tremor is not getting stronger, which is a great thing!
But the think that did improve very much is my strength: I can walk on my crutches up to 45 minutes without stopping (so much that blisters on my hands can appear
), I exercise up to one and a half hour every day, can do up to 500 push-ups per day (right now I am laughing because recently I hurt my back a bit with this over-aggressive exercising – but it is hard for someone like me who used to be a professional athlete to stop when I smell that I have this much strength), I am completely drug-free, and finally I fell like a fully productive mmber of the society.
One last thing, I did the non-myeloablative HSCT in late 2006, back then Prof. Slavin was still at Hadassah. Right now he works in the newly established center in Tel Aviv. So I do not know whether the non-myeloablative HSCT can still be done at Hadassah or Tel Aviv, but if I would have to make an assumption – my answer to both of that questions would be: Yes.