Miracle MS 'cure' made me feel 'born again'

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Miracle MS 'cure' made me feel 'born again'

Postby MSUK » Tue Feb 23, 2010 3:13 am

Miracle MS 'cure' made me feel 'born again' - http://www.msrc.co.uk/index.cfm?fuseact ... ageid=2954
MS-UK - http://www.ms-uk.org/
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Postby cah » Tue Feb 23, 2010 4:32 am

Here is the original: http://www.thisissurreytoday.co.uk/reig ... ticle.html

I like this article, except the headline. "miracle cure" is exactly what this treatment shouldn't be called.
"There is only one good, knowledge, and one evil, ignorance." Socrates
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....does this mean what I think it does....???

Postby codefellow » Tue Feb 23, 2010 6:18 am

....according to this article, a long-term MS sufferer (13 years) with substantial disability (unable to walk), is now enjoying restored function after the Liberation treatment.

This is the first indication we've had that the treatment can actually bring back lost function in SPMS.

That is too much to hope for.

Somebody please throw a bucket of reality on me.


--Al
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Postby Motiak » Tue Feb 23, 2010 6:26 am

I think that the long-term cure for MS will come from a combination of CCSVI and stem cell treatment. I imagine that treating CCSVI will stop MS progression and in some cases (like the original news story) allow some healing to take place, sometimes radical healing. However it seems more likely that as we learn more about stem cells that stem cells will be the true healing agent while the liberation procedure will be what stops the disease.
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Postby weegie1 » Tue Feb 23, 2010 8:44 am

Every time I see the term "Miracle Cure" associated with MS I think about the Dutch clinic and its stem cell therapy.
Cost some people a lot of money.
Or goat serum.
I am as optimistic as everyone else but "Miracle Cure" talk scares the whatsit out of me.
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Postby fogdweller » Tue Feb 23, 2010 10:56 am

cah wrote:Here is the original: http://www.thisissurreytoday.co.uk/reig ... ticle.html

I like this article, except the headline. "miracle cure" is exactly what this treatment shouldn't be called.


I agree completely. That kind of "overclaiming" is what will cause serious medical researchers to dismiss it without further investigation. MS is a difficult disease with occational spontaneous total remissions, so claiming you know the cause of your remission is unscientific.

There is enough serious science here to warrant LOTS of serious attention, and diluting it with "cure" claims is bad
"evangilism."
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Postby thornyrose76 » Tue Feb 23, 2010 12:06 pm

SPMS does not go into remission, except the angioplasty was done, and the end result for Mr. Jones was physical improvement.
Last edited by thornyrose76 on Tue Feb 23, 2010 12:10 pm, edited 1 time in total.
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Postby LR1234 » Tue Feb 23, 2010 12:08 pm

Thorny some people have managed to reverse and halt SPMS. Terry Wahls has. (I am sure there are others)
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Postby thornyrose76 » Tue Feb 23, 2010 12:11 pm

My MS Clinic here in Canada has told me there is no treatment for SPMS. If there was they'd have givenit to me already.
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Postby Vhoenecke » Tue Feb 23, 2010 12:33 pm

Being a Canadian dealing with the MS Clinic they may be scared to agree of something non-neurological (they are all neuros) could be causing MS. Don't fool yourself that they will embrace what will help us.
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Postby thornyrose76 » Tue Feb 23, 2010 6:20 pm

Vhoenecke wrote:Being a Canadian dealing with the MS Clinic they may be scared to agree of something non-neurological (they are all neuros) could be causing MS. Don't fool yourself that they will embrace what will help us.


No, that's it, it was like being hit with a brick wall when I mentioned ccsvi, but they've noffered me no hhelp. period. It's like " you can't be helped." I'll take my chances with Zamboni's theory but I can't get to where the procedure is being conducted.
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Postby nicko » Wed Feb 24, 2010 3:09 am

thornyrose76 wrote:
Vhoenecke wrote:Being a Canadian dealing with the MS Clinic they may be scared to agree of something non-neurological (they are all neuros) could be causing MS. Don't fool yourself that they will embrace what will help us.


No, that's it, it was like being hit with a brick wall when I mentioned ccsvi, but they've noffered me no hhelp. period. It's like " you can't be helped." I'll take my chances with Zamboni's theory but I can't get to where the procedure is being conducted.



They are doubful. They have seen many miracle cures come and go. Once excepted clinical trials have been completed and the results are satisfactory they will be on board. From a scientific point of view Zamboni's trials are not satisfactory. Also stanford and poland have not done trials. All the numbers available to us look like writing on the wall. But Dr's won't accept it until its been studied properly.

Buffalo is the first acceptable study and its 55%, sure blows away the 95% and 100% claims. Still very promising that ccsvi holds a key to some peoples ms. But its clear that its not the full cure for everyone with ms.

Its very hard for us ms sufferers to sit back and wait when something could potentially ease our suffering. But Dr's aren't the ones suffering.
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Postby costumenastional » Wed Feb 24, 2010 3:15 am

Somewhere in the back of my head there are numbers like 30% concerning the effectiveness of interferons. I didn't see them being skeptical about that...
They jumbed all over on this prescribing like crazy. 55% from Buffa;o sounds better to me anyway.
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Postby MSUK » Wed Feb 24, 2010 3:33 am

Martin has Primary Progressive MS. A much more comprehensive accoun tof his trip to Poland is featured in the current issue (59) of New Pathways magazine.
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Postby nicko » Wed Feb 24, 2010 3:55 am

costumenastional wrote:Somewhere in the back of my head there are numbers like 30% concerning the effectiveness of interferons. I didn't see them being skeptical about that...
They jumbed all over on this prescribing like crazy. 55% from Buffa;o sounds better to me anyway.


I highly doubt they jumped all over the crabs without proof of safety and effectiveness from trials. Once they went through the proper trials of course they jumped on them. Because there wasn't anything else available for ms treatment besides steroids.

But its only been a few months since Zamboni's papers went public and were already seeing a study from buffalo. So its moving along relatively quickly for medical trials.

If it really is an effective treatment, it will be proven by the trials. But as were sitting here progressing by the day its not a fun situation. I myself have been thinking about going elsewhere for treatment. But most Dr's are following proper procedure sitting back and waiting, as frustrating as it is.
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