Hi, I have been doing heaps of research on Ms as im getting to know someone with rrms and I came across "Stem cell therapy". There is actually a lot of ms patients who took use of the therapy and in some cases, it symptoms were gone but lessened. It is not available in US or UK as yet so people are travelling to Costa Rica and the cost roughly is around 25,000 - 35,000, including hotel, treatment, and other stuff.
I am just wondering if anyone here has undergone this therapy or what your opinions are on this.
Please do write back
Here is the deal stem cell therapy. It only works to stop further damage from being done it does nothing for the damage you have. People die from this treatment that is why it is not widely available in the US for MS which usually is not lethal.
My MS Specialist says his hospital will do Stem Cell Therapy for MS, the catch is they have not found one candidate which is a healthy person at the beginning of RRMS who is so bad off the DMDs or Tysabri are out for treating the MS.
I do not personally know much about stem cell therapy except in Uk there has just been news this week of a trial with 6 patients (not many!) and I am sure that if you put into a serach engine - MS stem cell therapy trial at Frenchay Hospital, Bristol (carried out at the BRahms Centre) you will find out some very current news which had encouraging results.
I would not have it. Not as is stands now no because I have had MS for forty years and have PPMS the damage is done.
I do think in the future it will be the way to go. If you were to do it you would do it because you want to be the bridge to future stem cell treatment not because you expect reversal to damage. That is a high price.
When I first heard about it I thought it reversed nerve damage but the MS Specialist says it does not.
Just the other day, "Nature Reviews Neurology published an international consensus on the future of stem cell transplantation research for people with MS" (http://www.medicalnewstoday.com/articles/188026.php)
The actual article is behind a paywall, but the various MS societies have published a public information booklet called "Stem Cell Therapies in MS" at http://www.mssociety.org.uk/research/stem_cell_pib.html.
I haven't had a chance to read it yet, but you may find it helpful.
I see you are new here and I hope you will stick around and find out more for your friend with MS. We all can use more educated advocates.
Stem cell research holds great promise. Right now the work is being done onlly on those people who other therapieshave failed. It is a last-resort treatment in trials.
Northwestern Unniversity in Chicago has done some successful work with this treatment. The stem cells are autologous - meaning they are donated by the person also receiving them. They are not embryonic stem cells, so we don't have to engage in the moral debate about their use.
check out their releases at
The important fact about this treatment is it appears to be effective if done early in the disease when the disability has not become so permanent that it can't be reversed.
The treatments that can be done in central and south America are unrpoven and unregulated and I would not spend my money to have it done there, yet.
From the research I found many people who successfully found their ms symptons lessed. I am aware that is not a cure and relapses are possible in the future. what concerns me is that its only been couple of years since their treatment (2-3 max) so its a short period of time to see long term results.
Lulu it is a great therapy and I pray America hurrys up with the research..
KK - has your friend had the stem cell therapy? I would be very interested in hearing the details of the treatment and what makes it a great option.
In your research, have these people been followed in a scientific manner or are these anecdotal reports? We have this conversation quite often around here - the internet has so much information on it and it is easy to fabricate success stories.
Hi. I checked the first one and it all SOUNDS good. But the skeptic in me would like to point out that the very first entry for this blog is about going to Costa Rica where he writes on their first day at the clinic -
"We were met by Dr. Solano, who drew blood. Over the next 24 hours the serum from the blood will be mixed with stem cells and be reintroduced back into our systems. Our treatment consists of 10 umbilical cord stem cell transplants, five done intravenously and five by spinal injection. "
If I were going to a clinic for an experimental treatment, I think I would prefer to check in, do a physical exam of some sort BEFORE giving blood. I'm not sure about the sense of timing for the 24 hours to mix this with the cells and reintroduce it to the MS patient, because I am no medical expert.
I didn't read all the pages of his blog, but I did see that he madee the decision to continue with Avonex in addition to the stem cell therapy. I don't know if he kept on that therapy, but if so, how can you tell which therapy worked to slow his MS?
The US is so far behind the rest of the world with the use of stem cell therapy, due to the political division on this issue. I do think that this therapy will someday be useful for repairing MS damage. I honestly don't think we are to that point yet - not here in the US or anyplace else.
If this really is effective, wouldn't the news be out there more than a blog or a youtube videos?
Sorry if this doesn't make much sense, I really am just throwing random thoughts out here.
The problem with MS is the unpredicable nature of the disease. It is possible to be in a remission phase with MS for a really long period of time - and perhaps this remission is coinciding with these periods of well-being for these patients. There is also tremendous power in the placebo effect which may play some role in this. I have no doubt that most of these people really believe that they have been helped by the stem cell treatment but I am also a believer in the scientific method that verifies this success.
Plus, if they are also taking a DMD, the overlap of treatment is hard to assign success to one thing over another. Just this morning I was reviewing the results from a 15-year study of people using Copaxone. The success is astounding - 80% are still walking unaided, two-thirds have NOT moved from RRMS to SPMS. The annual relapse rate was reduced by 78% and over half of the study group showed no decline and many had improvement in the EDSS.
It is my understanding that the other disease modifying drugs also offer equally impressive results.
How all this fits into the results of stem cell therapy from Costa Rica is a bigger question for me. I hope we will see more trials here in the US to better understand how this therapy might work for us. Again, I do think stem cell therapy is going to unlock some exciting things for us in MS and other diseases - we just aren't there, yet.
This also can fall into the category of medical tourism, which is a growing industry. Heart surgery in India, cosmetic surgery in China, hip replacement in the Phillipines- the list goes on and on. There's a clinic in Baja Mexio that offers an MS *cure* that takes 30 days and a boatload of money, but it does occur in a beautiful area close to a beach! :-)
It might be a little confusing when it comes to current stem cell treatments for MS. From what I can see, there are two camps. There are the open-label trials, like the one at Northwestern that Lulu mentioned, that use high-dose chemo to wipe out the immune system, then autologous stems cells are implanted to reconstitute a new one. This is also the method that is used by a neuro in Canada, named Freedman, and the one that the Cleveland Clinic is proposing as a trial. This is pretty intense, and is being targeted to patients who have severe relapses. I believe at least one death has been attributed to this procedure. Like others have noted, it is thought this will work best while still in the inflammatory phase of MS.
The other stem cell treatment is the one being offered in places Costa Rica and Israel. To be honest, I don't really understand the idea behind this method, but it involves drawing stem cells from the patient and injecting them back (in either the spinal canal, blood, or both). You can read accounts from those who have had this procedure at msworld . org forums.
Thanks, Sho, for that link. Marc's essays are always good but this one was particularly timely considering our discussion here. I hope everyone here will take some time to read Wheelchair Kamikazee and understand this difficult topic a bit better. - L
I don't know nearly as much on this topic as I would like, but I will jump in to add a comment about something said by Dr. Leslie Weiner, one of the neuros that spoke at the Center Without Walls symposiusm in LA on Saturday (funded by Nancy Davis Foundation). Dr. Weiner stated that the promise of stem cell therapy for treating MS will be realized in the immediate future, ie next 1-2 yrs, based on the results they are seeing in trials. I don't recall which trials specifically and need to look at my notes, but what did stand out to me was his confidence and enthusiasm which was very apparent, with the other neuros nodding their heads in agreement.
BTW, much LESS enthusiasm particularly from Dr. Stephen Hauser, for CCSVI, which I'll talk about hopefully this weekend when I have a chance to summarize what I learned that day.
Its has made many things clearer. I guess it might be seen dangerous if my friend wanted to consider this treatment at the moment in time. He is currently in the RRMS stage and i just dont want him to progress. I guess we'll just wait for the FDA to allow this treatment and hopefully much research and information is provided in the future and have greater positive results in regards to the treatment.
Though I dont doubt the treatment is helping people but as lulu said how can we be sure if its the therapy thats working or they are not expereicnes any relapses causing them to feel ms free for the moment.
I guess we should all just keep our eyes and ears open to any new information and keep eachother updated..
The US takes so long because there is a higher legal, ethical, and scientific threshold that must be met than in many countries. That's not to say it's a system without flaws, but generally speaking, by the time a therapy is available to the public, it's been tested for safety (at least in the short term) and shown to have effect.
So yes, doing this at the moment involves risk with no proof of result. Researchers are working on it via well-designed studies at present. Anyone/any country who is already doing it outside of a research/investigative setting that is regulated and monitored is dealing in a form of snake oil. Perhaps they may genuinely think they have it cracked, perhaps they know it's all about getting desperate patients to pay them a lot of money.
The best bet at present is to enrol in a study. Speaking as someone on a drug study for over three years myself, this comes with a lot of caveats, requirements, and screening.
Stem cells hold so much promise. I can see that it's likely the future. We just haven't figured it out yet.
Recently I met a person had been in the HALT trial, which did stem cell replacement - it got him up and moving and is quite the story. You can read his experience at http://www.activemsers.org/about/aboutdave.html
Beck in 2008 when I was first diagnsed I started saying that I think stem cell therapy will unlock the cure for so many of us - and I still think that way.
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