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PostPosted: Sun Jan 27, 2013 4:22 am 
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Vikingquest wrote:
hey ariehs, good to see you posting again, but sorry to hear that the MSC's didn't work for longer... I think that pretty much everyone who frequents the stem cell threads here are looking into HSCT as a way to permanently stop their ms.

It's a bummer to hear that Slavin has acted like that, as I was thinking of using his place for HSCT if it came to it...


HSCT is not a miracle and it does not help everyone. It most likely helps if you have active lesions, otherwise your chances are close to zero. It also costs a lot of money, over USD 100,000 at a reputable place. If you chose any of the stem cell options, talk to specialists from different places and do no rely only on these forums. I do not think that any person here in tims after reading some articles on the net became a stem cell specialist.

Read also independent studies on stem cell treatment results as clinics inolved in the business give you different statistics. It is their money. :)


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PostPosted: Sun Jan 27, 2013 12:15 pm 
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Gogo wrote:
Vikingquest wrote:
hey ariehs, good to see you posting again, but sorry to hear that the MSC's didn't work for longer... I think that pretty much everyone who frequents the stem cell threads here are looking into HSCT as a way to permanently stop their ms.

It's a bummer to hear that Slavin has acted like that, as I was thinking of using his place for HSCT if it came to it...


HSCT is not a miracle and it does not help everyone. It most likely helps if you have active lesions, otherwise your chances are close to zero.


Wow, that’s a very brave statement!

I had no active lesions and I underwent HSCT in late 2006 – early 2007 in Hadassah, Jerusalem, under prof. Slavin supervision. Ever since then, I am totally drug free and my EDSS fell by at least 1 – I am saying at least, because it is hard for my doctor and me to asses my current EDSS (before HSCT I was 6.25) because after the HSCT i broke a leg, due to that nasty fracture my left leg is 3 cm shorter, so the balance is even more damaged, not to mention that leg that experienced a bad fracture cannot never be the same regarding strength. But I can walk on my crutches for 1,5 kilometers, sometimes even more, i once managed to walk for one hour without stopping (before HSCT i walked around 300 meters, sometimes much less) I can swim without rest 2 kilometers, it takes me 40-45 minutes for that (before HSCT 50 meters), I cycle one hour in my room, and after that I box and do 20x60 pushups.

It is not my attention to brag, I am just trying to illustrate how I benefited from HSCT.


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PostPosted: Mon Jan 28, 2013 1:16 pm 
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Actually Gogo, the data that has been pulled together is strongly in favour of it being successful even if you are SPMS or PPMS, about 60% chance of your disease going into remission if you have progressive ms. I'd take those chances.

I want to hear more about this new MSC treatment that Slavin is working on... any more info on that?


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PostPosted: Mon Jan 28, 2013 2:14 pm 
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packo wrote:
Gogo wrote:
Vikingquest wrote:
hey ariehs, good to see you posting again, but sorry to hear that the MSC's didn't work for longer... I think that pretty much everyone who frequents the stem cell threads here are looking into HSCT as a way to permanently stop their ms.

It's a bummer to hear that Slavin has acted like that, as I was thinking of using his place for HSCT if it came to it...


HSCT is not a miracle and it does not help everyone. It most likely helps if you have active lesions, otherwise your chances are close to zero.


Wow, that’s a very brave statement!

I had no active lesions and I underwent HSCT in late 2006 – early 2007 in Hadassah, Jerusalem, under prof. Slavin supervision. Ever since then, I am totally drug free and my EDSS fell by at least 1 – I am saying at least, because it is hard for my doctor and me to asses my current EDSS (before HSCT I was 6.25) because after the HSCT i broke a leg, due to that nasty fracture my left leg is 3 cm shorter, so the balance is even more damaged, not to mention that leg that experienced a bad fracture cannot never be the same regarding strength. But I can walk on my crutches for 1,5 kilometers, sometimes even more, i once managed to walk for one hour without stopping (before HSCT i walked around 300 meters, sometimes much less) I can swim without rest 2 kilometers, it takes me 40-45 minutes for that (before HSCT 50 meters), I cycle one hour in my room, and after that I box and do 20x60 pushups.

It is not my attention to brag, I am just trying to illustrate how I benefited from HSCT.


Hi packo,
I am really happy to hear any success stories like yours with stem cells and thank you for sharing your story. Actually, dr. Slavin told me that he recommends MSC for me instead of HSCT as I have not had active lesions for years. He told me that HSCT does not help anyone. He saw my MRIs. That is why I suggest that if someone is interested in stem cells, meet dr Slavin, he knows much more about stems cells than any of us. If I had enough money I would try all these procedures. :)
Why did he recommended HSCT instead of MSC for you? Did they have MSC that time?


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PostPosted: Mon Jan 28, 2013 2:25 pm 
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Vikingquest wrote:
Actually Gogo, the data that has been pulled together is strongly in favour of it being successful even if you are SPMS or PPMS, about 60% chance of your disease going into remission if you have progressive ms. I'd take those chances.

I want to hear more about this new MSC treatment that Slavin is working on... any more info on that?


hi Vikingquest,
I agree. You are saying the same thing. 60% is far from 100%. :) If I had enough money, I would try it.
As for MSC, dr Slavin recommends it for those patients who do not have active lesions, but as I said the best thing if you meet him and see what he says in your case.


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PostPosted: Mon Jan 28, 2013 3:35 pm 
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@Gogo

I wrote this once, prior to my arrival in Jerusalem I was on mitoxantrone so Prof. Slavin and Dr. Karussis together with my neurologist (she went with me) concluded that the absence of lesions might be the result of mitoxantrone treatment.

As for MSC, back then such a treatment was developed, but could only be applied outside Israel, in Greece to be exact. They even harvested and froze some of my stem cells in the case I decide to do the MSC. Later on my neurologist concluded that right now I do not urgently need MSC, and therefore should wait for some additional data and results that would justify the application of MSC in my case.

Regarding Prof. Slavin, please do not get me wrong, I am not trying to promote a certain person or idea (one has to be very careful with all those wild places and stem cell treatments all around the world). But he is indeed a world class expert, just look at his CV. One thing impressed me first time when I came to Hadassah, I saw a completely renewed parts of his department equipped with the most modern technology . In every room there was a name of the sponsor, so I asked a nurse who are they, and she told me that those are rich patients of Prof. Slavin (whom he saved life) or their relatives. That impressed me very much.


Last edited by packo on Tue Jan 29, 2013 3:14 am, edited 1 time in total.

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PostPosted: Mon Jan 28, 2013 3:51 pm 
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packo wrote:
@Gogo

I wrote this once, prior to my arrival in Jerusalem I was on mitoxantrone so Prof. Slavin and Dr. Karussis together with my neurologist (she went with me) concluded that the absence of lesions might be the result of mitoxantrone treatment.


Not trying to be annoying or anything but had to point this out...
http://www.oncolink.org/resources/chemo ... chemoID=38
Quote:
Mitoxantrone (Novantrone®)
Pronounced: MY-toe-TANE
Classification: Antineoplastic Agent
About Mitotane
Mitotane is used to treat cancer of the adrenal gland. The drug has toxic effects on the mitochondria in adrenal cortical cells, causing these cells to die. This also decreases the production of cortisol and alters metabolism of steroids. You may need to take a steroid (such as hydrocortisone) by mouth to make up for this loss. Your oncology team will monitor you for this side effect. The exact mechanism of action is unknown.


Since I believe hpa-axis dysregulation drives lesion-forming MS. I think your neurologist was correct. If you cut back on cortisol long enough, your hippocampus can recover. This will likely correct your hpa-axis dysregulation and halt MS progression. That's my theory anyway. :) Glad you are doing well.


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PostPosted: Tue Jan 29, 2013 9:35 am 
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Anonymoose wrote:
Since I believe hpa-axis dysregulation drives lesion-forming MS. I think your neurologist was correct. If you cut back on cortisol long enough, your hippocampus can recover. This will likely correct your hpa-axis dysregulation and halt MS progression. That's my theory anyway. :) Glad you are doing well.


Hi Anonymoose,
I know it is not stem cell related, but it is interesting what you are saying. Have you read any study about this link? How can you cut back on cortisol? How can you correct your hpa-axis dysregulation?


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PostPosted: Tue Jan 29, 2013 10:12 am 
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Liberation wrote:
Hi Anonymoose,
I know it is not stem cell related, but it is interesting what you are saying. Have you read any study about this link? How can you cut back on cortisol? How can you correct your hpa-axis dysregulation?

There is proof of hpa-axis hyper-reactivity and hippocampal atrophy in MS, as early as CIS. There is proof that excess cortisol causes hippocampus atrophy which causes hpa-axis dysregulation. And there is proof that in least some cases, with inhibition of excess cortisol, the hippocampus can regenerate and re-sensitize to cortisol. This should correct hpa-axis dysregulation if it is not connected to physical disruption of it's regulation (compression or a big lesion in the glands).

I'm using clonidine to reduce cortisol (and aldosterone). It seemed to be the safest way to go when I was researching options. There is a cortisol and aldosterone synthase inhibitor (LCI699) stuck in phase II studies that would work. I'm not sure it would be the best option as it would leave the precursors floating around possibly causing high blood pressure. Then their is mitoxantrone and a bunch of other hard core drugs.

I've read sooo many studies and posted them. If you look in general forums, most of my posts are about my obsession with hpa-axis, cortisol, and aldosterone. Studies galore in them!


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PostPosted: Tue Jan 29, 2013 8:21 pm 
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Location: SYDNEY
HI ariehs my name is seeva from australia like to go and see DR.Silvani or his stemcell treatment please let me know his contact details and the cost
regards
seeva :roll:


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PostPosted: Sat Feb 02, 2013 5:16 am 
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packo wrote:
As for MSC, back then such a treatment was developed, but could only be applied outside Israel, in Greece to be exact. They even harvested and froze some of my stem cells in the case I decide to do the MSC. Later on my neurologist concluded that right now I do not urgently need MSC, and therefore should wait for some additional data and results that would justify the application of MSC in my case.

Regarding Prof. Slavin, please do not get me wrong, I am not trying to promote a certain person or idea (one has to be very careful with all those wild places and stem cell treatments all around the world). But he is indeed a world class expert, just look at his CV. One thing impressed me first time when I came to Hadassah, I saw a completely renewed parts of his department equipped with the most modern technology . In every room there was a name of the sponsor, so I asked a nurse who are they, and she told me that those are rich patients of Prof. Slavin (whom he saved life) or their relatives. That impressed me very much.


I agree with you, Prof. Slavin has a great experience in this field.
Neurologists always say that you wait and see. :) It is never urgent for them. However, MS is unpredictable. As for MSC, as Prof. Slavin said that you can only lose your money. It is a safe procedure. 60-70% of people benefit from that. Several clinical trials already in phase 1/2 confirmed this.


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