Stem cells and primary progressive MS

Discuss stem cells, adult and embryonic, and their therapeutic potential for MS here.

Stem cells and primary progressive MS

Postby KateCW » Sat Aug 27, 2011 4:32 pm

I recently had a conversation with one of the neurologists I see and we were discussing stem cells. He said there is some question about needing to ablate the immune system in PPMS as there is considerable doubt that the immune system is as involved in PPMS. We were talking about it more from a repair/ restorative angle and whether it may be helpful to those of us with damage from PPMS.

Thoughts, experiences?
Kathy, 49 with PPMS,full time scooter.
Married to a wonderful man, mother to a darling 9 yr old boy
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Re: Stem cells and primary progressive MS

Postby georgegoss » Thu Sep 22, 2011 12:57 am

Hi Kate,

From the early HSCT clinical trials a minimum of two-thirds of advanced PPMS patients had their underlying MS disease activity 100% completely stopped. To me, that would suggest that progressive patients have the same (or at least closely similar) etiology as run-of-the-mill RRMS patients. Meaning that progressive MS patients would be overwhelmingly likely to benefit from lymphocyte ablation (immune system "reset") as acheived in HSCT treatment.

The relative stats (stratified by disease type) listed on this page:

http://themscure.blogspot.com/2010/06/s ... rence.html

There is also a scientifically-valid argument for nerve-conduction repair to be made using mesenchymal stem cell (MSC) infusion therapy, so long as the MSC population is sufficiently large (colony expansion) as currently done at the Clevland Clinic or CTCI, Israel as I describe here (near the bottom) of this page:

http://themscure.blogspot.com/2011/06/g ... -have.html
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Re: Stem cells and primary progressive MS

Postby KateCW » Thu Sep 22, 2011 6:47 am

Thanks George. Is CTCI different from Hadassah? I recently contacted Hadassah and was told their MS stem cell program was closed?
Kathy, 49 with PPMS,full time scooter.
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Re: Stem cells and primary progressive MS

Postby HUD45 » Thu Sep 22, 2011 7:26 am

Hello KateCW. I recently returned from Tel Aviv and CTCI where I received the lymphoblative HSCT protocol for my PPMS. CTCI is a private clinic for profit featuring Prof Shimon Slavin who was previously at Hadassah in Jerusalem. I had a very good experience while at CTCI and would do it all over again for a chance at stopping my MS. It will obviously be many months or even years to definately decide if the treatment was a success but i am hoping for the best. I do not believe they accept MS patients at Hadassah curently as you were told. Hope this helps...HUD45
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Re: Stem cells and primary progressive MS

Postby packo » Fri Sep 23, 2011 3:41 am

Hi, Kate.

I already mentioned this on the forum, I did the non-myeloablative (lymphoablative) HSCT at Hadassah in late 2006 – back then, Prof. Slavin was the chief of the bone-marrow department at Hadassah. In 2007 (I think) he moved to CTCI, so this procedure (for MS) cannot be done in Jerusalem any more.

Now some of the doctors and stuff that were close co-workers with Prof. Slavin at Hadassah work in the “newly” established CTCI – for example Dr. Gesundheit.
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Re: Stem cells and primary progressive MS

Postby bspotts1 » Fri Sep 23, 2011 10:55 am

Hi Packo,
And did you receive any benefit from this procedure? My PPMS wife is considering this option.

brad in sarasota
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Re: Stem cells and primary progressive MS

Postby packo » Sat Sep 24, 2011 5:44 am

My MS is ever since the HSCT stopped, in fact, I am getting better step by step – some small steps, if you ask me :-D .

I wrote about my experience on HSCT cure rate: stem-cells-f25/topic15125.html
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Re: Stem cells and primary progressive MS

Postby DeuxExMachina » Sat Oct 15, 2011 10:18 pm

Hi everyone,

I'm especially interested in HSCT and PPMS because I am currently a suspected PPMS patient and, at 20 years old and my whole life ahead of me, I am determined to stop at nothing to prevent further progression. So far I am EDSS 2.0 and my physician suspects I may have had PPMS for years.

I found this 2009 Russian study which, in a rare break from the clinical obsession with RRMS patients, included a sizeable portion of PPMS patients in a trial of HSCT treatment efficacy under three protocols: early intervention to halt progression, medium intervention to limit damage and prevent further deterioration, and late-stage or "salvage" intervention to try and prevent death from severe progression. There was one case where a severely disabled EDSS 7 PPMS patient had recovered to an EDSS score of 6 at 3.5 years followup. Also, early intervention in all cases appeared to yield higher results.

It's an encouraging study as there has almost been a disdain towards PPMS patients seeking HSCT treatment. Sort of a 'wait your turn' attitude which is profoundly disheartening, especially as the PPMS course is otherwise so difficult to treat and yields no chance of respite.

Here is the link: http://www.stemcellms.ru/doklad06.php

Mike
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Re: Stem cells and primary progressive MS

Postby Asher » Sun Oct 16, 2011 2:29 am

I'm especially interested in HSCT and PPMS because I am currently a suspected PPMS patient and, at 20 years old and my whole life ahead of me, I am determined to stop at nothing to prevent further progression. So far I am EDSS 2.0 and my physician suspects I may have had PPMS for years.


Go for it Mike, the sooner the better!! Wish you the best of luck, Asher
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Re: Stem cells and primary progressive MS

Postby georgegoss » Sun Oct 16, 2011 10:57 pm

DeuxExMachina wrote:Hi everyone,

I'm especially interested in HSCT and PPMS because I am currently a suspected PPMS patient and, at 20 years old and my whole life ahead of me, I am determined to stop at nothing to prevent further progression. So far I am EDSS 2.0 and my physician suspects I may have had PPMS for years.

I found this 2009 Russian study which, in a rare break from the clinical obsession with RRMS patients, included a sizeable portion of PPMS patients in a trial of HSCT treatment efficacy under three protocols: early intervention to halt progression, medium intervention to limit damage and prevent further deterioration, and late-stage or "salvage" intervention to try and prevent death from severe progression. There was one case where a severely disabled EDSS 7 PPMS patient had recovered to an EDSS score of 6 at 3.5 years followup. Also, early intervention in all cases appeared to yield higher results.

It's an encouraging study as there has almost been a disdain towards PPMS patients seeking HSCT treatment. Sort of a 'wait your turn' attitude which is profoundly disheartening, especially as the PPMS course is otherwise so difficult to treat and yields no chance of respite.

Here is the link: http://www.stemcellms.ru/doklad06.php

Mike


Thanks for posting this Mike! I had always known from early US-based (phase I) clinical trial data that PPMS patients, on balance, had beneficial efficacy with HSCT. But this is the first time I have seen this Russian study that you have cited and I appreciated being able to read through it which provides a greater level of detailed clinical results.

I think the clear lesson here is that people with all forms of MS have an opportunity to experience probable curative benefit with HSCT (better than any other treatment available today). And it's also very clear that treatment earlier, as opposed to later is better.
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Re: Stem cells and primary progressive MS

Postby HUD45 » Mon Oct 17, 2011 9:06 am

Thanks for the link to the interesting Russian study Mike. Good for you in looking for a long term solution for your slowly advancing MS. It is unusual for someone your age to have PPMS for some time already but certainly not unheard of. I too have a diagnosis of PPMS and have recently had HSCT performed in Tel Aviv at CTCI. I have only been home for a month, so it is way too early for me to make a call on the success of the treatment protocol I had (lymphoblative in nature). Good luck in your quest for curative results. I think you are on the right track looking into HSCT as an option.
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Re: Stem cells and primary progressive MS

Postby Lyon » Wed Oct 19, 2011 6:03 pm

..
Last edited by Lyon on Wed Nov 09, 2011 9:14 pm, edited 1 time in total.
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Re: Stem cells and primary progressive MS

Postby georgegoss » Wed Oct 19, 2011 6:37 pm

Lyon wrote:This is an interesting FREE older article which doesn't address the exact phase of MS but instead "aggressive" MS in 9 subjects http://archneur.ama-assn.org/cgi/content/full/65/8/1044


Thanks for sharing this Lyon. It has now become standard terminology in thr HSCT research circles that "aggressive" is synonymous with "rapidly progressing/evolving" which is not related to any progressive form of MS, just means that the MS disease-induced symptomatic deficit is manifesting and accumulating very rapidly. . . . ironically, such aggressive MS cases are the ones that respond most favorably to HSCT in which the curative results often appear miraculous; i.e. getting up out of a wheelchair and walking (such as the case with Carmel Turner):

http://www.youtube.com/watch?v=AnwEaUZ4 ... er&list=UL
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Re: Stem cells and primary progressive MS

Postby packo » Sun Nov 13, 2011 12:41 pm

DeuxExMachina wrote:Hi everyone,

I'm especially interested in HSCT and PPMS because I am currently a suspected PPMS patient and, at 20 years old and my whole life ahead of me, I am determined to stop at nothing to prevent further progression. So far I am EDSS 2.0 and my physician suspects I may have had PPMS for years.

I found this 2009 Russian study which, in a rare break from the clinical obsession with RRMS patients, included a sizeable portion of PPMS patients in a trial of HSCT treatment efficacy under three protocols: early intervention to halt progression, medium intervention to limit damage and prevent further deterioration, and late-stage or "salvage" intervention to try and prevent death from severe progression. There was one case where a severely disabled EDSS 7 PPMS patient had recovered to an EDSS score of 6 at 3.5 years followup. Also, early intervention in all cases appeared to yield higher results.

It's an encouraging study as there has almost been a disdain towards PPMS patients seeking HSCT treatment. Sort of a 'wait your turn' attitude which is profoundly disheartening, especially as the PPMS course is otherwise so difficult to treat and yields no chance of respite.

Here is the link: http://www.stemcellms.ru/doklad06.php

Mike


Mike, I would like to appologize to you once again publicly, I did not see the message that you sent me one month ago - namely, I do not visit forum that often because these days I really don't have much time. As George and Asher pointed out, you should act now! This was an experience that changed my life...
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Re: Stem cells and primary progressive MS

Postby bspotts1 » Tue Nov 15, 2011 10:07 am

Hi HUD,
Judging from your last post about a month ago, you're about 2 months back from CCTI. How are things going for you? Did you have a mesenchymal stem cell transplant? Do you have any others places where you have shared your experience???

Brad in Sarasota
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