2 Years Post HSCT And MS Still Stopped

[JerryD]

I just received an email from George Goss. He explained that Asher is in contact with Prof. Slavin to try using MSC to possibly rebuild what has been taken from him over the past 15 years, the time that he has been dx'd with MS.
George warns all who want HSCT, that the primary outcome is to stop the progression of the disease. Overcoming the residual deficits should not be considered as a primary outcome, because it hasn't been shown to be a possibility. Just a maybe. So if the body heals the accrued deficits, that is a bonus. He told me that he feels that Asher wants to try to reverse the accrued deficits. And if it is a possibility, I wish him the best. Good luck to all

[MJG]

Happy New Year everyone!

I just passed the two year post-HSCT milestone and my MS is still stopped and I have recovered 50% of my pre-transplantation physical function.

Some people will disagree with my nomenclature, but I call that a cure.

I posted the details here:

*please see member profile for personal website*

Regards to everyone.

George

I coulde'nt agree with you more. Here in the US FDA dosen't seem like they are moving forward. But I did find a hospital in california that do the procedure which I will hopfully be going there. Good luck to any one suffering from this disease.

[JerryD]

sexygatubela,
I am glad that you are at a reputable hospital with a track record. I wish you much luck and send prayers for your success.
I would suggest you read Hopeful4future's user profile and the url there for another MS blog site. Asher Cohen ( a former Heidelberg HSCT patient ) actually posts there. You may be interested in his perspective. Good luck

[sexygatubela]

Dankeschön JerryD!

I hope they say yes. I'm sick and tired of being sick and tired. After reading upon it and doing research, it gives me hope. I'm not convinced yet that it can "cure" it, but I'm confident it can stop progression.

My MS has progressed a lot in 2.5 years. I added two points to my EDSS in just a year. . Nicht gut!

I'll keep posting about my possible adventure

Be well.

[JerryD]

I have been in email contact with George Goss. And he tells me that his disease progression is 100% stopped. He has a friend named Asher Cohen. He is having the same positive experience. It was reported, here, that Asher was experiencing some setbacks. This turns out to be false.
I wish you the best experience in Heidelberg. We will be looking forward to reports of your progress. Good luck

[sexygatubela]

So glad to hear these results! I just started the process at the hospital in Heidelburg, Germany.

Let's see if I'm found to be a good candidate for it.

Thanks for sharing your thoughts and experience.

[shahnader]

HSCT

Dear George,
Congrats on these results. i admire your passion. i myself have completed stem cell transplant 2.5 years ago and noticed many improvements, some sustained, some wore off. Can you provide more details on exactly what type of hematopoietic cells are used in the procedure you went through ? are they drawn from ones own bone marrow, or from healthy donor cord blood cells ?
BBB penetration is key determining the type of SC to be used. Mesenchymal Stromal Cells (MSC) from bone marrow or stomack fat (Adipose) are the smallest (50nm wide) and can cross the BBB, repair the damages to myelin and axons and make the microglial immune elements floating in the CNS to become self tolerant. This is the basis of the SCT as operated in Israel by Professor Slavin. if these tasks are successfully accomplished at 100%, then its a cure. The data so far is far behind 100%, but very effective in people with early stages of MS. Unf ortunately there is no way to monitor the SC operations in the body, so we are dependent on people's feedback and post MRI comparisons. If MRIs would show lesion elimination and no new activities, then i'm comfortable in calling this a cure. i wish we get there some day.

I'm very interested in more details of this procedure if you can provide,

Best,
Shah

Good job to highlight this issue.

I never said, and it has not been claimed, that every MS patient has their MS stopped via HSCT. I have only said that for everyone that does have their MS progression stopped via HSCT has yet to relapse into "further active progression" (which so far no one has relapsed after having their disease stopped using the updated phase II & III treatment protocols).

From the clinical trials here are the statistical facts of HSCT treatment of MS patients. . . .

Early RRMS patients:
100% of patients halting of disease progression
>80% of patients experience 'substantial' (>1 EDSS improvement) of existing symptoms

SPMS patients with EDSS >6.0:
78% of patients halting of disease progression
>60% of patients experience 'substantial' (>1 EDSS improvement) of existing symptoms

PPMS patients with EDSS >6.0:
66% of patients halting of disease progression
Number of patients experiencing symptomatic improvement of existing symptoms has not been design-stidied and has not been quantified

Going to your question. . . . how can MS be cured if it does not work for everyone? That's because there is no universal definition of a "cure" for MS. Doctors, researchers and everyone else cannot agree what the definition of a cure is (there is no text book that explains what a cure for MS is). Therefore, it is up to each individual to decide for themselves what a cure is. For my own case I have been cured (100% stopping of my disease and 50% improvement of pre-treatment symptoms). No one else can tell me what a cure for me is, even if my definition does not translate to anyone else.

[mc1016]

Re Georgegoss what is a cure comment

Wow Georgegoss , you speak amazingly ,, never looked at my stem cells treatment like that , I am also presently MS free I guess then , in my atrophied leg my muscle growth is at 80% in 6 months, I can hear , I can go to the movies watch my boys play ball , I dont have to memorize bathroom locations and so much more, my Doc says I have residual effects of having MS ,and the limp I still have is habitual . Working on that .. Interesting I have a new outlook to begin, thanks for that.

[georgegoss]

I am really, really glad for you, georgegoss!


My question is...has every single person with MS who has had this exact procedure had this exact same outcome? It doesn't sound like it from your statement, but maybe I'm misunderstanding.

If it works for everyone who has the procedure (the exact procedure you speak of - aren't there a few variations?) I might think "yeah, maybe". But...how can it be called a *cure* if it does not work for everyone?

Good job to highlight this issue.

I never said, and it has not been claimed, that every MS patient has their MS stopped via HSCT. I have only said that for everyone that does have their MS progression stopped via HSCT has yet to relapse into "further active progression" (which so far no one has relapsed after having their disease stopped using the updated phase II & III treatment protocols).

From the clinical trials here are the statistical facts of HSCT treatment of MS patients. . . .

Early RRMS patients:
100% of patients halting of disease progression
>80% of patients experience 'substantial' (>1 EDSS improvement) of existing symptoms

SPMS patients with EDSS >6.0:
78% of patients halting of disease progression
>60% of patients experience 'substantial' (>1 EDSS improvement) of existing symptoms

PPMS patients with EDSS >6.0:
66% of patients halting of disease progression
Number of patients experiencing symptomatic improvement of existing symptoms has not been design-stidied and has not been quantified

Going to your question. . . . how can MS be cured if it does not work for everyone? That's because there is no universal definition of a "cure" for MS. Doctors, researchers and everyone else cannot agree what the definition of a cure is (there is no text book that explains what a cure for MS is). Therefore, it is up to each individual to decide for themselves what a cure is. For my own case I have been cured (100% stopping of my disease and 50% improvement of pre-treatment symptoms). No one else can tell me what a cure for me is, even if my definition does not translate to anyone else.

[georgegoss]

What about the studies that reported that MS patients did progress after HSCT?

What studies? Can you be specific?

[georgegoss]

I am 5 years post Novantrane with no additional symptoms and I pulled from the nose dive I was in before starting the treatement.
So if I have gone into remission or perhaps "cured" would the stem cells benefit me since Novantrane essentially did what the chemo used in your treatment did?

Thanks

Novantrone (mitoxantrone) is a good drug and I'm glad you have personally responded well to it. However, a single person's experience is only anecdotal and holds no scientific credibility as proof in isolation. If it can't be repeated in a controlled manner, its not a cure. Mitoxantrone is a very well-studied drug and it's clear that based on population studies from the clinical trials, mitoxantrone cannot hold a candle to the success of HSCT which has shown overwhelming curative results in "scientifically-repeatable" conditions.

HSCT has shown 100% curative results in early RRMS cases (and still stops MS in the majority of progressive cases). Pretty hard to beat 100% success rate, which Mitoxantrone cannot. But like I said. . . . I'm exceptionally happy that it has worked for you. More power for your health!

Stem cells used to reverse MS - The Independent

Three years after the treatment, carried out between 2003 and 2005, progression of the disease had been halted in [100% of] patients and [81%] had seen a "significant" reduction [reversal/improvement] in their disability.

http://www.independent.co.uk/life-st...s-1520402.html

[Redwings]

Not a single MS'er anywhere in the world has progressed after having their MS disease progression stopped via HSCT (now at 12 years post transplantation from the phase I trials). Not a single person.

What about the studies that reported that MS patients did progress after HSCT?

[STEVEP]

Novantrane

I am 5 years post Novantrane with no additional symptoms and I pulled from the nose dive I was in before starting the treatement.
So if I have gone into remission or perhaps "cured" would the stem cells benefit me since Novantrane essetially did what the chemo used in your treatment did?

Thanks

[georgegoss]

I guess the nuance is being lost in the intransigence.

Not a single MS'er anywhere in the world has progressed after having their MS disease progression stopped via HSCT (now at 12 years post transplantation from the phase I trials). Not a single person. I would love to know of any other treatment that can even come close to repeatably demonstrating this accomplishment.

Just my own theory that because of the human nature of some people they don't want to use the world cure because they're afraid of the implication of having to take control of their own life. (HSCT is not an 'easy' cure so it requires affirmative determination to purse it) I find it amazing how many people just don't want to take responsibility for their own life. Seems so much easier to blame outside forces and put down people that have accomplished stopping (curing) their own MS. Ridicule is the act of a dissolutioned person with a dearth of faith or understanding. I would also bet that when HSCT becomes FDA-approved for treatment of MS sometime around 2020 (or just after), there will still be people saying "thre is no cure for MS." I'm just glad that there are independently-thinking people that don't listen so intently to malcontent naysayers.

[there]

LOL "cure" are you kidding 2 years. I had no progression for 10 years, I guess I could claim anyting or everything or nothing cured for those 10 years. Oh wait the next 10 years I progressed I guess not.