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Re: How likely will there be a cure for MS within the next 1
Posted: Mon Jun 11, 2012 2:28 pm
by CVfactor
As I have already said, to stop MS you need to stop it before you transition to a progressive state. From Dr. Burts work this apears to be the case in that no one he has treated with RRMS and his protocol has transitioned to a progressive state. If this is not a cure, what is your definition?
Re: How likely will there be a cure for MS within the next 1
Posted: Mon Jun 11, 2012 2:41 pm
by cheerleader
nevermind
Re: How likely will there be a cure for MS within the next 1
Posted: Mon Jun 11, 2012 2:52 pm
by CVfactor
Everyone can have an opinion, but if you believe so strongly about this why not have your husband come off of Copaxone? Surely if inflamation has no role it could really help us to see how well he does without it. I mean your a CCSVI pioneer why not follow through?
Re: How likely will there be a cure for MS within the next 1
Posted: Mon Jun 11, 2012 3:01 pm
by cheerleader
nevermind
Re: How likely will there be a cure for MS within the next 1
Posted: Mon Jun 11, 2012 3:23 pm
by CVfactor
Will there be a cure for MS in the next 10 years? Although not yet proven, HSCT has a lot of promise even though it does not fit your idea of what causes MS and what constitutes a cure.
http://www.thelancet.com/journals/laneu ... 1/fulltext
Findings
Between January, 2003, and February, 2005, 21 patients were treated. Engraftment of white blood cells and platelets was on median day 9 (range day 8—11) and patients were discharged from hospital on mean day 11 (range day 8—13). One patient had diarrhoea due to Clostridium difficile and two patients had dermatomal zoster. Two of the 17 patients receiving alemtuzumab developed late immune thrombocytopenic purpura that remitted with standard therapy. 17 of 21 patients (81%) improved by at least 1 point on the Kurtzke expanded disability status scale (EDSS), and five patients (24%) relapsed but achieved remission after further immunosuppression. After a mean of 37 months (range 24—48 months), all patients were free from progression (no deterioration in EDSS score), and 16 were free of relapses. Significant improvements were noted in neurological disability, as determined by EDSS score (p<0•0001), neurological rating scale score (p=0•0001), paced auditory serial addition test (p=0•014), 25-foot walk (p<0•0001), and quality of life, as measured with the short form-36 (SF-36) questionnaire (p<0•0001).
Interpretation
Non-myeloablative autologous haemopoietic stem cell transplantation in patients with relapsing- remitting MS reverses neurological deficits, but these results need to be confirmed in a randomised trial.
I guess this is why we have trials, but only time will tell.
Re: How likely will there be a cure for MS within the next 1
Posted: Mon Jun 11, 2012 4:28 pm
by merlin26
cheerleader wrote:There are no studies completed to back up that claim, CV. In fact, Burt says this--
As there are no completed randomized studies on HSCT for MS, the final results of both randomized trials – MIST, that compares cyclophosphamide/rATG as a second-line therapy for interferon/copaxone failures and the BEAM/ATG regimen as a predominantly third-line therapy as proposed in this issue of Multiple Sclerosis Journal – will be important to evaluate medium- and long-term outcome of both regimens, including their toxicity.
The evaluation of HSCT is far from over. We know it doesn't work in progressive MS, and we have people on here, like Chris, who have had this HSCT in RRMS, and continue to progress.
It is wrong and misleading to call this a cure. It may help some people find stability for awhile...but as Harry said earlier, his wife went 20 years without MS progression with NO treatment. Until we understand why gray matter atrophies in pediatric MS, CIS and continues to atrophy-we are no closer to a cure.
MS is not about inflammation. It is about gray matter atrophy and axonal loss. I've provided links to research which backs this up in my other posts.
cheer
I think Chris actually was progressive or secondary progressive when he had the treatment. He was no longer walking unassisted so I believe the treatment may not have had as beneficial effect on him as in others with RRMS. However the benefits he has received have been tracked as he has not progressed at all since having the treatment and has remained stable.
Re: How likely will there be a cure for MS within the next 1
Posted: Tue Jun 12, 2012 5:44 am
by shaight
cheer,
you are incredibly negative to anyone who is trying to look at positive results from any treatment. You also make claims that are not factual, but you believe them to be...which is great for you, but not for all.
i am out of this thread...it's been beaten to death.
good luck to all.
Re: How likely will there be a cure for MS within the next 1
Posted: Fri Jun 22, 2012 3:01 pm
by chrishasms
I was RRMS AND did HICY. I was good about 4 years but it came back. Some of the people in my trial had to be retreated 2 or 3 times, but, I reactivated after the trial was done so I can't go back. I have had 0 atrophy or new lesions, some actually have healed. Dr. Brodsky at JH told me everyone who did it more than once they lasted longer than some others, and always longer than the previous time. Now I do 3g of roids every 2 month to keep it at bay. It's good that the HiCy made my MS soooooo much slower. It sucks I can't get it again now. Life goes on.
Oh yeah, my doc refuses to say I'm not RRMS.
Re: How likely will there be a cure for MS within the next 1
Posted: Fri Jun 22, 2012 4:34 pm
by CVfactor
Hello chrishasms,
I just recently found out about Hi-Cy and have interest in it. You say you re-activated but have no new lesions or atrophy but are taking steroids to keep it at bay. What do you mean by re-activation? Has your EDSS score increased? Also you say you cannot have it again, but is this due to cost or some other factor?
Thanks
Re: How likely will there be a cure for MS within the next 1
Posted: Sun Jun 24, 2012 11:13 pm
by chrishasms
Well first, I can't have it because Johns Hopkins is done with it. Second, I haven't any active lesions anymore and my trial was lesions and edss. My EDSS is probable the same, maybe worse. Reactivated, I just meant I have some symptoms again. I thought it was easy but to do it every other day wouldn't be good either so you gotta make sure you know what you're doing. If you have active lesions and falling off an EDSS cliff I'd say go but if you're stable I would relax. It will maybe be ok'd in the next few years. I digress though, if you feel it's go time, I wish you God's speed!
Re: How likely will there be a cure for MS within the next 1
Posted: Mon Jun 25, 2012 5:42 am
by HarryZ
shaight wrote:cheer,
you are incredibly negative to anyone who is trying to look at positive results from any treatment. You also make claims that are not factual, but you believe them to be...which is great for you, but not for all.
i am out of this thread...it's been beaten to death.
good luck to all.
I do not want to speak for Cheer but when I see posts such as yours, I will not remain silent.
Unfortunately your accusation of negativity to her comments can't be further from the truth. Why are you equating a different opinion and disagreement from Cheer as being "negative"? Just because she doesn't share your idea of HSCT's effectiveness doesn't mean negativity. It's a different opinion and of course is not shared by all readers. That's why this forum is so good...different ideas, different thoughts, different treatments...all of which work for some but certainly not for everyone. That is MS's signature and has been for decades.
Perhaps it is best for you to leave the thread, especially if you can't disagree without saying someone is negative.
Harry
Re: How likely will there be a cure for MS within the next 1
Posted: Tue Jun 26, 2012 5:43 am
by Moom9335
To add some dark humor to the oh so darkness that is the reality of MS,regarding a "cure" read the greekfromdetroit.com.
It will definitely lighten up this current diatribe.
Re: How likely will there be a cure for MS within the next 1
Posted: Tue Jun 26, 2012 6:41 am
by HarryZ
Moom9335 wrote:To add some dark humor to the oh so darkness that is the reality of MS,regarding a "cure" read the greekfromdetroit.com.
It will definitely lighten up this current diatribe.
Hi Moom,
I must say that the helicopter story certainly provided a lot more reading enjoyment than what has been going on here lately! Perhaps we can encourage some company to do a double blind controlled trial to test it out
Harry
Re: How likely will there be a cure for MS within the next 1
Posted: Tue Jun 26, 2012 6:45 am
by Moom9335
I think Greek is seriously considering it!
Re: How likely will there be a cure for MS within the next 1
Posted: Wed Jun 27, 2012 6:09 am
by HarryZ
Moom9335 wrote:I think Greek is seriously considering it!
Who knows what kind of result he would get from that! MS has been known to react to trauma and as well to a major disruption of the immune system. But the results are all over the map and at different levels. Trauma, however, quite often has a detrimental reaction and worsens the symptoms. My wife, with her progressive MS, was more or less going along OK using Prokarin to help her symptoms. Then she fell awkwardly, broke her leg in 3 places and with that trauma, started to go downhill quickly.
So from that perspective, I don't think Greek would do himself any favors with the helicopter trick!!
Harry