My CtrlAltDel - Status

Discuss stem cells, adult and embryonic, and their therapeutic potential for MS here.
Pesho
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Re: My CtrlAltDel - Status

Post by Pesho » Sat Aug 25, 2012 1:36 pm

32 000$ in Israel? If this is the case, it could be a lot cheaper in other countries. Just I'm not sure if it only repairs the damage or it stops the disease?

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Liberation
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Re: My CtrlAltDel - Status

Post by Liberation » Sun Aug 26, 2012 5:47 am

.........
Last edited by Liberation on Fri Apr 05, 2019 8:00 am, edited 2 times in total.

Pesho
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Re: My CtrlAltDel - Status

Post by Pesho » Sun Aug 26, 2012 11:06 am

I'm from East Europe, Bulgaria :). I'm planing to go to Moscow for HSCT next year, but I will follow MSC treatment and I might go with that if it proves a viable option.

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czapski
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Re: My CtrlAltDel - Status

Post by czapski » Thu Sep 13, 2012 4:16 pm

Maybe little off-topic, but I love You guys, this forum has given me hope and helped me live last 1,5 years (and coincidence or not - progression stopped). Similarly to You I have rather "exposed" job and live in "official denial" of disease (and I am 31 years old too ;)

Gogo
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Re: My CtrlAltDel - Status

Post by Gogo » Fri Sep 14, 2012 4:06 am

czapski wrote:Maybe little off-topic, but I love You guys, this forum has given me hope and helped me live last 1,5 years (and coincidence or not - progression stopped). Similarly to You I have rather "exposed" job and live in "official denial" of disease (and I am 31 years old too ;)
I am glad to hear that your progression stopped. Keep up your good spirit! The present is not bad, we have HSCT and also MSC. Both are in clinical trials and both are available for public for money and the efficacy of both are confirmed, even with no 100% of success rate, but what the heck, in life there is no 100%. ...And the future will be just better.

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shucks
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Re: My CtrlAltDel - Status

Post by shucks » Fri Sep 14, 2012 7:19 am

Glad to see you are doing better. I finally had to "come out" around work and to the community I am in in order to try to raise money for the HSCT treatment. I have gotten a bunch of patronization, but a fair amount of understanding and gnuine caring. I have been surprised that we have raised nearly 30k in a month. It is lowing down, but we are moving forward. I have recieved a lot of great information and support from the folks here and think Highly of nearly all innvolved with this forum.
"A gun is a tool, Marian; no better or no worse than any other tool: an axe, a shovel or anything. A gun is as good or as bad as the man using it. Remember that." -- Shane

Who is John Galt?

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Asher
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Re: My CtrlAltDel - Status

Post by Asher » Mon Sep 24, 2012 12:30 am

Hi,

The next chapter in an evolving story...

I promised honest reporting, so here we go. It took some 10-12 months for the chemo fog of HSCT to clear before I could start telling how I was really doing. The benefits and improvements I had reported were real but 14-15 months post transplantation I started to notice I had stopped to improve and I also noticed small and subtle signs that my MS was still active and that I am getting worse again. You see, after 15 years of MS one becomes extremely attuned and accurate about the slightest and most subtle changes in your physique. I'll spare you the details, but HSCT has stopped working for me and to quote George "this is a probability game, no guarantees".

So I'm back to square one. I let no grass grow under my feet and I have been to see Prof. Slavin in Tel-Aviv Israel two weeks ago. He is a remarkable person, took his time, was very thorough and very candid. Bottom line, you may have already guessed, the next 10 days I'll be on my way to Tel-Aviv for a BMA, 3 months after which I will go to Switzerland to have the cultured MSC's pumped into my failing body. If this works and should I experience even modest improvement, I'm willing to repeat this procedure once every 12-18 months (provided the Prof. is willing to adopt such a strategy).

So a somewhat somber post spiced with hope, yours,

Asher

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shucks
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Re: My CtrlAltDel - Status

Post by shucks » Mon Sep 24, 2012 5:30 am

Asher,

I know I should know this, but were you rr pp or sp at the time of your treatment? I am sill in rr, but disability is slowly accumulating. I went to see dr Burt and have been fundraising ever since. I is great to have your perspective on this.
"A gun is a tool, Marian; no better or no worse than any other tool: an axe, a shovel or anything. A gun is as good or as bad as the man using it. Remember that." -- Shane

Who is John Galt?

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Asher
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Re: My CtrlAltDel - Status

Post by Asher » Mon Sep 24, 2012 1:33 pm

Hi shucks, I'm SP. You're more likely to fully benefit from HSCT as statistics are on your side.

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shucks
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Re: My CtrlAltDel - Status

Post by shucks » Tue Sep 25, 2012 5:26 am

Please keep us posted. I guess what dr Burt put in his last paper about inflammation being the key is really the key to this crazy disease.
"A gun is a tool, Marian; no better or no worse than any other tool: an axe, a shovel or anything. A gun is as good or as bad as the man using it. Remember that." -- Shane

Who is John Galt?

Gogo
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Re: My CtrlAltDel - Status

Post by Gogo » Tue Sep 25, 2012 12:12 pm

shucks wrote:Please keep us posted. I guess what dr Burt put in his last paper about inflammation being the key is really the key to this crazy disease.
shucks, what do you mean by "inflammation being the key"? The worst part of the disease is the progressive stage and that part is not inflammatory with no active lesions. This stage is neuro degenerative and not inflammatory.

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shucks
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Re: My CtrlAltDel - Status

Post by shucks » Tue Sep 25, 2012 2:38 pm

A big part if the theory behind hsct as a treatment is to stop the underlying inflammatory disease activity to ward off the next two stages of the disease. Along with having an immune naive system to replace the old malfuntioning immune system.
"A gun is a tool, Marian; no better or no worse than any other tool: an axe, a shovel or anything. A gun is as good or as bad as the man using it. Remember that." -- Shane

Who is John Galt?

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Liberation
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Re: My CtrlAltDel - Status

Post by Liberation » Wed Sep 26, 2012 12:26 am

,,
Last edited by Liberation on Fri Apr 05, 2019 8:00 am, edited 1 time in total.

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Asher
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Re: My CtrlAltDel - Status

Post by Asher » Wed Sep 26, 2012 7:24 am

orry to jump in, guys, but I am in contact with Dr Slavin just as Asher does. You are both right, shucks and Gogo. Dr Slavin told me that he only recommends HSCT when you have active lesions, so there is an active autoimmunity, but he does not recommend it when you do not have it. Then, something else is wreaking havoc, a neurodegenerative process is taking place. This is the case mostly with SP an PP, when he recommends MSC. As reaching progressive stage takes sometimes even twenty years, it will be interesting to see the effects of HSCT that time around. It is also an interesting thing, what is the relationship between autoimmunity and the neurodegenerative process as most of the SP and PP patienst have no active lesions.
It is also an interesting thing that EAE, the mice disease that they base MS on, can be cured by drugs, but none of the drugs developped can cure MS.
And still so much remains an enigma: why do the statistics show some 70% of SP and some PP patients benefit from HSCT? Is it that they were wrongly diagnosed, or is it that the neurodegenerative process does involve some kind of inflammatory activity? Perhaps George could offer some perspective?

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Liberation
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Re: My CtrlAltDel - Status

Post by Liberation » Thu Sep 27, 2012 8:01 am

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