How likely will there be a cure for MS within the next 10 yr

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Re: How likely will there be a cure for MS within the next 1

Postby cheerleader » Sat Jun 09, 2012 2:29 pm

"She" mentions copaxone online all the time. I never attribute all of Jeff's health to one thing, nor does he. It's been a combo platter of good blood flow, nutrition, exercise, supplements, stress reduction and yes, his copaxone treatment. Jeff remained on it, because Dr. Zamboni suggests that all RRMS who are doing well, stay on their DMDs. Like Dr. Z's wife!
(Scared--we're "sure" because his new MRI taken last month showed normal looking gray matter (atrophy has reversed), and he's had no MS relapses or progression in the last 3 years.)

Godot...you can see there are lots of opinions here. Take what you will, and please keep posting, Hope you're getting some good info.
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Re: How likely will there be a cure for MS within the next 1

Postby CVfactor » Sat Jun 09, 2012 3:23 pm

Godot,

To answer your question, there are currently phase III HSCT trials ongoing now. There is a growing number of people who went through this treatment and others who are currently in the process. Unfortunately, the FDA has not yet acknowledged this treatment for MS (unlike the "liberation" treatment which the FDA issued a warning to MS patients).

Many of these people used to belong to this website, but have moved on because of the "hype" behind CCSVI as well as all of the other mis-information that is being spread.

I would suggest you go to the facebook site and join and decide for yourself whether this is a dangerous cure or not.

http://www.facebook.com/groups/149103351840242/

Best of luck to you.
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Re: How likely will there be a cure for MS within the next 1

Postby shaight » Sat Jun 09, 2012 7:53 pm

HarryZ wrote:


The drug therapies also have been total failures to many patients as has been HSCT.


Harry


where are the current failures of HSCT ? there were deaths initially when they used TBI, which they no longer use today. if the procedure, whether myeloablative or non-myeloablative, is done properly, i am not aware of any issues. all i have seen are people that are not longer using a CRAB drug and their MS is in remission. Sandi had her HSCT 12 years ago and she is still MS free today. certainly, some have not recovered from some of their disabilities, but the underlying disease is not attacking them anymore...they are not getting worse. on the other hand, many people have improved their EDSS score.

once the third trial is complete odds are this will be approved by the fda and most put it around the yr 2020-2022 in the US.
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Re: How likely will there be a cure for MS within the next 1

Postby coltgirl » Sun Jun 10, 2012 9:44 am

CVfactor wrote:
Many of these people used to belong to this website, but have moved on because of the "hype" behind CCSVI as well as all of the other mis-information that is being spread.



CVfactor, your comment regarding this forum don't surprise me. I find the amount of misinformation and conspiratorial beliefs held by a vocal number of its members disconcerting. It's because of them that my response to the question posed on this thread is sadly, "No".

Godot, there are better and more reliable MS forums out there that don't have an agenda to push. The creators of this forum should change its motto. Clearly, there IS a very strong bias going on here that needs to be acknowledged.
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Re: How likely will there be a cure for MS within the next 1

Postby ScaredofMS » Sun Jun 10, 2012 12:44 pm

cheerleader wrote:(Scared--we're "sure" because his new MRI taken last month showed normal looking gray matter (atrophy has reversed), and he's had no MS relapses or progression in the last 3 years.)
cheer


That is very good to hear. I'm very happy for him. Clearly whatever you are doing is working
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Re: How likely will there be a cure for MS within the next 1

Postby HarryZ » Sun Jun 10, 2012 7:59 pm

where are the current failures of HSCT ? there were deaths initially when they used TBI, which they no longer use today. if the procedure, whether myeloablative or non-myeloablative, is done properly, i am not aware of any issues. all i have seen are people that are not longer using a CRAB drug and their MS is in remission. Sandi had her HSCT 12 years ago and she is still MS free today. certainly, some have not recovered from some of their disabilities, but the underlying disease is not attacking them anymore...they are not getting worse. on the other hand, many people have improved their EDSS score.

once the third trial is complete odds are this will be approved by the fda and most put it around the yr 2020-2022 in the US.


I wish I could remember the site I was reading about HSCT a number of months ago but I can't. It was taking an overall look at the SC treatment a number of patients had and was analysing them. Some patients were doing extremely well, some little if any improvment and some not well. Sound familiar with MS treatments?

And how would they know if the underlying disease is not attacking them any longer when they don't know what the underlying cause is?! Perhaps the SC treatment was working, perhaps the disease was in remission...who knows. Coincidence? Maybe, maybe not. But like any treatment, if you use it and your MS lets go, who cares?

My wife had her initial attack when she was 21. Was flat on her back for 2 weeks. The symtpoms gradually went away with little residual problems. She went about 20 years without any treatment (there wasn't any back then) and was fine. Then the disease started back. Had a treatment been available to her and she used it, then everyone would have said the treatment worked for her. You just never know with MS.

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Re: How likely will there be a cure for MS within the next 1

Postby shaight » Mon Jun 11, 2012 7:38 am

^yes, that is true. this disease is annoying to say the least. the rrms name makes sense from that perspective. it just sucks that most move beyond the rrms at some point.
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Re: How likely will there be a cure for MS within the next 1

Postby cheerleader » Mon Jun 11, 2012 8:05 am

Here is a recent analysis from this year, Harry and shaight. HCST does nothing for progressive or secondary disease. This is from one of the inventors of this therapy--Dr. Richard Burt of Northwestern, who now states that secondary progressive MS is NOT about the immune system, but about axonal degeneration. There is no inflammation or immune involvement in SPMS. He has been studying HCST treatment for a decade.

Initial trials tended to select patients for secondary progressive disease with an increase in permanent disability of 0.5–1.0 Expanded Disability Status Scale (EDSS) steps within the prior 12 months. Despite using intense regimens, the patients’ disability did not improve and even continued to progress at a rate not convincingly different than the natural history of progressive MS.6,7 Immune analysis of samples collected before and after HSCT demonstrated an immune reset with a surge in recent thymic emigrants (naïve T cells) and change in T-cell receptor (CDR3) repertoire skewing.23 Therefore, in progressive MS, despite aggressive immune ablative therapy resulting in a post-transplant immune reset, patients did not improve and disability progressed within the post-transplant follow-up reported.
The initial HSCT clinical outcomes reaffirmed that progressive MS is an axonal degenerative disease and not primarily immune mediated.24 Transplant results also suggest that the relatively common and often unchallenged clinical practice of treating progressive MS with FDA-approved therapies, all of which are immune-based interventions, should be viewed as an ineffective and costly expenditure of limited financial resources.

http://msj.sagepub.com/content/18/6/772.full

Many neurologists are now looking at progressive MS as "true" MS---and stating that the RRMS inflammation and white matter damage is not the real disease, that axonal degeneration and loss of gray matter (which happens at the beginning of the disease and continues) is MS, since this is the facet of the disease that can be linked with disability and progression. Unless we understand why there is gray matter loss in MS--which happens before RRMS, at CIS and in pediatric MS, and after RRMS, during progression-- there will never be a "cure."
http://www.biomedcentral.com/1471-2377/12/9
http://www.ncbi.nlm.nih.gov/pubmed?db=p ... d=22422807
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Re: How likely will there be a cure for MS within the next 1

Postby chrishasms » Mon Jun 11, 2012 8:58 am

I wish HiCy or HSCT was available. I would do it once a month and twice in December if need be. It was the easiest thing I ever did. It was 4 days of the flu for roughly 4 years of no progression. I always here these horror stories of what people here about the procedure and they really are false. It was so easy and really safe.

The biggest issue is money. I was in a trial of 40 people, of the 40,it had a 90% efficacy rate with edss improvement as well. Baxter pharmaceutical owns cyclophosphamide. They didn't want to make more of the drug. They figured they couldn't make money on it if it was used for MS. Johns Hopkins actually had to buy the rights to it. Now anyone for any reason gets cyclophosphamide from JH now, who orders it from Baxter. The phase 3 trial will now cost 15 million, the have 4 and are trying for more. They have to do this now as well because the rights to the drug ends in 7 years.

I firmly say as long as there are Republicans and others who have healthcare lobbyists living in their office, we will never ever have a cure. Look to socialized medicine countries because they have half the over head, and no FDA in the way.

Oh please, someone, anyone, find something to end this disease that doesn't involve a gun and a lonely room.
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Re: How likely will there be a cure for MS within the next 1

Postby CVfactor » Mon Jun 11, 2012 9:14 am

cheerleader wrote:Here is a recent analysis from this year, Harry and shaight. HCST does nothing for progressive or secondary disease. This is from one of the inventors of this therapy--Dr. Richard Burt of Northwestern, who now states that secondary progressive MS is NOT about the immune system, but about axonal degeneration. There is no inflammation or immune involvement in SPMS. He has been studying HCST treatment for a decade.


I think this seems to be the view of many researchers that are performing HSCT in the US in the various trials. I cannot say if it is true or not because I think people have had success with HSCT that were in the secondary progressive/primary progressive course of the disease such as George Goss.

However, it appears that the recent theory is that once all of the Meylin is destroyed, your axions are exposed and they begin to degenerate because the Meylin contains nerve growth factors at the direct interface of the axon (where it makes contact). So this is the point where the secondary progressive phase begins (or starts immediatley with PP due to extreme demylination).

http://www.jhasin.com/files/articlefiles/pdf/ASM_9_2_p37_41.pdf

Multiple sclerosis (MS) is a chronic disease that is characterized by central nervous system (CNS) inflammation, demyelination, and neurodegeneration. Although the pathophysiology of MS is not completely understood, it is clear that much of the underlying disease process is clinically silent and continues even when patients are not experiencing symptoms. Most patients initially present with relapsing/remitting MS, in which acute disease episodes are separated by a return to normal or near-normal neurologic function. Eventually, most patients transition to secondary progressive MS, which is defined by the gradual accumulation of irreversible neurologic impairment. A consensus has recently begun to emerge that the long-term progressive disability in patients with MS is due to irreversible neurodegeneration, and that inflammation is less prominent in the later stage of the disorder. MS lesions exhibit extensive axonal transection and degeneration, and may involve both gray matter and white matter. Demyelination alone does not appear to cause axonal injury, and most axons survive transitory demyelination. However, axons that are chronically demyelinated are at substantial risk of degeneration. This may reflect the loss of important nerve growth factors that are produced by surrounding oligodendrocytes and that are essential for axonal survival. The gradualaccumulation of axonal injury probably contributes to the long-term atrophy of the CNS that is often observed in patients with chronic MS, and to the eventual progression of neurologic impairment. Early initiation of disease-modifying therapy may therefore help to slow long-term neurodegeneration and disease progression in patients with MS. (Adv Stud Med. 2009;9(2):37-41)


So, it looks like it would be best in my view to have the HSCT procedure before the transistion to the secondary progressive phase.
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Re: How likely will there be a cure for MS within the next 1

Postby cheerleader » Mon Jun 11, 2012 11:37 am

from your link, CV--

CVfactor wrote:
A consensus has recently begun to emerge that the long-term progressive disability in patients with MS is due to irreversible neurodegeneration, and that inflammation is less prominent in the later stage of the disorder. Demyelination alone does not appear to cause axonal injury, and most axons survive transitory demyelination. )


So, it looks like it would be best in my view to have the HSCT procedure before the transistion to the secondary progressive phase.


But it makes no sense to focus on inflammation, CV, if MS is a disease of axonal injury and loss. The quote you linked says that this demyelination is not the lone cause of axonal injury. Gray matter loss and axonal injury is the first step in MS. The gray matter is gray, because the axons are not myelinated. And gray matter loss precedes demyelination in other parts of the brain. Until we understand gray matter loss----there is no cure.


Pathology studies conducted as early as the 19th century have already recognized that MS affects not only the WM but also the gray matter (GM), which somehow got neglected over the years [1]. However, in the last decade, substantial pathological, immunological and imaging evidence confirmed that tissue damage in the GM is a key component of the disease process in MS and that it occurs from the earliest clinical stages [2-5]. During the past few years, the number of studies investigating GM damage in MS has increased exponentially.
In the last 5 years, numerous cross-sectional and longitudinal studies established that GM damage is a better predictor of physical disability and cognitive impairment than WM damage [5]. Most studies examining this argument used novel imaging techniques that can indirectly assess the extent of GM damage, the most important being a measurement of GM atrophy [2,5].

http://www.biomedcentral.com/1471-2377/12/9

Gray matter has been neglected, because it has been difficult to see. White matter lesions show up more clearly on MRI, and they became the focus of MS treatments. But white matter lesions are not MS. Nor are they unique to MS. This is why someone, like my husband, can have over 20 white matter lesions--and still be able to hike and bike. He has no gray matter atrophy. This is why progressive MS is not about inflammation. PPMS patients rarely have more than a few white matter lesions. Yet progressive MS features continuing gray matter atrophy. Treatments have been focusing on white matter, to the detriment of all of those with MS. I have no "agenda"--other than hastening research into halting gray matter loss. If that includes diet, exercise, supplements, venoplasty, meditation, whatever--I'm all for it. If you have links showing how any treatment halts gray matter atrophy and neurodegeneration, CV or anyone else....please share.

Gray matter is the key.

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Re: How likely will there be a cure for MS within the next 1

Postby shaight » Mon Jun 11, 2012 1:24 pm

cheerleader wrote:Here is a recent analysis from this year, Harry and shaight. HCST does nothing for progressive or secondary disease. This is from one of the inventors of this therapy--Dr. Richard Burt of Northwestern, who now states that secondary progressive MS is NOT about the immune system, but about axonal degeneration. There is no inflammation or immune involvement in SPMS. He has been studying HCST treatment for a decade.

Initial trials tended to select patients for secondary progressive disease with an increase in permanent disability of 0.5–1.0 Expanded Disability Status Scale (EDSS) steps within the prior 12 months. Despite using intense regimens, the patients’ disability did not improve and even continued to progress at a rate not convincingly different than the natural history of progressive MS.6,7 Immune analysis of samples collected before and after HSCT demonstrated an immune reset with a surge in recent thymic emigrants (naïve T cells) and change in T-cell receptor (CDR3) repertoire skewing.23 Therefore, in progressive MS, despite aggressive immune ablative therapy resulting in a post-transplant immune reset, patients did not improve and disability progressed within the post-transplant follow-up reported.
The initial HSCT clinical outcomes reaffirmed that progressive MS is an axonal degenerative disease and not primarily immune mediated.24 Transplant results also suggest that the relatively common and often unchallenged clinical practice of treating progressive MS with FDA-approved therapies, all of which are immune-based interventions, should be viewed as an ineffective and costly expenditure of limited financial resources.



This issue with this is you are only looking at the US and dr burt. he follows the FDA trial approved non-myeloablative procedure. myeloablative is the other option. on the other hand, dr slavin will treat spms with non-myeloablative and has been successful.

Professor Shimon Slavin heads a clinic in Tel Aviv, Israel, which performs stem cell transplants for cancer patients and various auto immune diseases, among them MS. He has been working in the field of HSCT since the 1980s and worked at the National Institute of Health at the same time as Dr. Burt. Professor Slavin has developed a more gentle method of ablating the immune system, known as RIC (reduced intensity conditioning) which is the protocol which is also used by Dr. Burt in his studies at Northwestern.


i am all for looking at every avenue possible to treat and cure this horrible disease. ccsvi is great and i hope they learn more as time goes on. every stone unturned leads to more discovery and of course more questions. MSC is also a point of interest on the horizon. hopefully good things will come from that also.
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Re: How likely will there be a cure for MS within the next 1

Postby cheerleader » Mon Jun 11, 2012 2:38 pm

shaight...
Burt's review (which I linked above) covers the non-myeoablative treatments, too. You have to read the whole review. Please understand what he's saying. He covers all immune-based treatments.

Immune-based treatment, including HSCT, is not effective in progressive MS. Patients with a long disease duration, older age, or high EDSS scores without active inflammation on MRI, until proven otherwise, should have their diagnosis of relapsing–remitting MS questioned.

The title of this review of 1995 to 2012 is called---Autologous hematopoietic stem cell transplantation for multiple sclerosis – if confused or hesitant, remember: ‘Treat with standard immune suppressive drugs and if no inflammation, no response’

http://msj.sagepub.com/content/18/6/772.full
If there is no inflammation, there will be no response in HSCT.

Mesenchymal stem cell transplants may help progressive patients someday....but HSCT, whether myeoablative or not, is not effective in progressive MS. According to the man who helped invent all of these treatments, and has worked with Slavin/Hadassah.
I don't mean to be negative or argumentative....just trying to be realistic, and so is Burt. I think it's questionable for Slavin to be treating the woman whose blog you quoted above, since she is progressive MS. Where are Slavin's published results in SPMS? I couldn't find any. http://rausausderms.wordpress.com/2012/ ... ed-so-far/
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Re: How likely will there be a cure for MS within the next 1

Postby CVfactor » Mon Jun 11, 2012 3:04 pm

I believe George Goss has data on his blog from the myeoblative trials overseas that shows a success rate of 70% for primary progressive/secondary progressives at halting disease progression. You can go to his blog and find the data yourself.

I believe George was declined by Burt for his trial because he was secondary progressive, so he went overseas for the myeoblative procedure.

The problem with the non-meyoblative method is it does not always leave the immune system naive such that re-administration of chemo may be required if a relapse occurs. This is problematic for progressives since they do not have relapses. So in effect, the non meyoblative protocol is more like extreme immunosupression but does not completely reset the immune system because you don't require re-immunizations (the immune system still has memory).

The myeoblative protocol does completely erase all immune system memory which leaves you with an immune system like a baby has which requires re-immunization against common diseases. It also completely wipes out the memory mechanisms that cause MS in the first place.
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Re: How likely will there be a cure for MS within the next 1

Postby cheerleader » Mon Jun 11, 2012 3:09 pm

The reason Dr. Burt will not treat SPMS or PPMS with HSCT is because he says it will not work. Myeoablative, or not.
Dr. Burt says that if there is no inflammation, there is no reason for HSCT, or any immune related treatments. Are there published papers on PPMS/SPMS, CV?
According to Dr. Burt, there have been no successes outside of RRMS, and he cites publications, and is a medical professional, not a blogger calling this "a cure."
http://msj.sagepub.com/content/18/6/772.full

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