This Is MS Multiple Sclerosis Community: Knowledge & Support

Um, That PDF is his research. Click "begin manual download" and read.
http://jnnp.bmj.com/cgi/rapidpdf/jnnp.2008.157164v1

Um....Read what I wrote above - endovascular surgery (opening up the vein and returning blood flow)
over and out!
AC

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

lionheart,

Cure is a four letter word.

What does it mean? What would you need to experience to feel that you have been cured or are on the path towards being cured? I have posed this question on another MS board and surprised others with the fact that many don't think this way because the question begs one to think in a way we have been conditioned away from. We are told to cope and hope.

So when folks actually feel inspired to wonder about what it might mean to be cured or to be on the path of being cured ..... one gets a variety of responses. There is clearly subjectivity built into the question.

I think Sarah has been cured, but I don't know if Sarah thinks she's been cured. See what I mean? Working through about 10 pages of thread, I selected as my adopted answer (at least a current one that is subject to change) the Howard Weiner definition, which is 3 years of therapy without relapse or progression. On that measure, there are several folks here at TIMS that are on the path towards a cure.

Ken

_________________
My Starting Point
Understanding MS 101: Doctor Talk and People Talk<br /><br />

oh my, thank you for the compliment but I am most certainly not always right, and a nurse is not a neurologist or researcher, but it makes it a lot easier to read it because some things I already know, like if I see "vein" I don't think of an artery and lay people might, making for confusing reading. I do try to support what I say though with something that people can refer to. I think that's important there is a lot of opinion here at TIMS, it's best if people can see how you got there.

PK, there is an immense amount of reading to do in that thread. I tried to find a page that had several links in it that make it less onerous to go through the whole thread, but every page has a link or two in it that are pertinent so that is not really possible.

The topic of this thread is hopefulness for Lionheart and whether we'll have a cure in our lifetime. All I wanted to do was to offer that a totally new direction in research that was literally accidentally discovered offers some real and new promise that COULD result in something very soon.
marie

My understanding of a cure is finding the cause and removing the cause therefore you know for sure it has gone. I don't know if they will ever find a "cure" for MS but I certainly think they will find ways of stopping its progression and maybe even be able to reverse some of the damage done.

L x

I haven't seen the Zamboni information but it sounds similar to what Dr. Jonez was doing in the late 40's and early 50's when he used IV histamine on thousands of MS patients. He also believed that MS was of a vascular nature and about 80% of the patients he treated experienced improvement in their symptoms.

Prokarin, developed by Elaine Delack, functions under the same premise in helping reduce and/or relieve MS symptoms. My wife got to see this first hand when she used Prokarin for over 7 years.

Yet the established world of MS medicine becomes quite offended and abusive when these alternate theories are presented. Not only won't they acknowledge them but these people will go out of their way to discredit anything outside of their thinking. Maybe that's another reason why MS research has been so abysmal for decades!

Harry

A universal truth.

No matter what the topic is, everyone believes the last explanation they adopted at the expense of any change that may have subsequently occured.

Ken

_________________
My Starting Point
Understanding MS 101: Doctor Talk and People Talk<br /><br />

My 2 bits is a rehash of some things I posted before...

I think a cure within 20 years is likely.

Just in the last few years, there seem to be a lot more research studies that are looking at MS from different perspectives. Also, there are seem to be more collaborative efforts where researchers around the world are sharing information and coordinating their work.

I think a significant amount of the progress we've made in understanding MS in recent years is due to technology improvements, most notably I think, MRI and other imaging technologies (also mentioned by Cheerleader). It seems to me that what's holding back a cure right now is mostly related to imaging -- i.e. seeing what is actually happening in our grey and white matter over time, or even watching changes taking place in real time.

I think those technological changes are coming. The technology guru Ray Kurzweil has made a lot of technology projections based on the historical rate of technological progress. He believes that we will have completely reverse-engineered the brain somewhere in the 2025-2030 range. I believe we should be able to cure MS at least slightly before we have a full understanding of how the brain works.

A thought or two about the idea of a cure -- I'm not sure if I believe that a cure has to be: a) a miraculous one-time treatment, like a vaccination, that gets rid of all disease activity (possibly with a second treatment to repair damage); or b) an ongoing treatment that completely halts disease activity as above, but has to be taken regularly.

I almost want to use a "ThisIsMS" efficacy scale to measure whether something is a cure to me -- i.e. if treatment X stops the disease, but requires me do Y and had Z side-effects, would I still want to come to ThisISMS in the hopes of learning about something better on the horizon? I think if a treatment stopped the disease in its tracks, but had to be injected 3 times a day and made me feel fluish all the time, I would still be checking this website hoping to find out about something better, so I would hesitate to call something like that a cure, even though it gets rid of disease activity.

NAPAY, maybe I should adopt your definition, because in that case, Rebif cured me! Maybe "cured" is just a state of mind...

Hi Ken,
With it in mind that a lot of people feel that there isn't necessarily a direct link between lesion activity and symptoms/progression I'm wondering how MRI activity fits into your definition?

Specifically, with the lack of noticed increase of symptoms and lack of increased EDSS rating during that 3 year period, does MRI activity alone signify progression or not?

Bob

When Kim has completed the ABX treatment, she ought to be able to live illness free without needing continued medication. The Dr. Weiner quote was not clear about whether his idea was attached to continued need for therapy or not, but at least in the case of those on ABX, the ultimate goal is to get off the drugs and on with life MS-free, progression-free and relapse free.

But, like I was saying .... variety of responses to a quesiton that is subjective in it's very nature. Ken

_________________
My Starting Point
Understanding MS 101: Doctor Talk and People Talk<br /><br />

First thing - please can someone make my link shorter!

Regarding a cure:

Taking prevention first - plans are underway for a prevention study on the basis of the recent Vit D research (by Prof Ebers). If successful, this could mean that people (I'm guessing Vit D given to pregnant women and young children) in the future won't get MS.

Stopping the inflammatory aspects of the disease - quite a few powerful drugs e.g. Campath in the pipeline. The trick will be to reduce the potential side effects of these drugs whilst retaining efficacy.

Protecting nerves already damaged - Lamotrigine trial (testing whether it offers neuro-protection) has ended and results expected in April. Neuro-protection trial using an element of cannabis underway with results expected in 2011.

Repairing the damage. Lots going on including Promise 2010 etc. May involve implanting stem cells, but more likely to involve encouraging / promoting repair from our own stem cells.

Full genetic analysis should be completed this year. This should identify various pathways which could be targeted by treatments.

So alot underway. And I suspect that Harry Z's idea of a researcher stumbling across something will also play a part.

Here is a recent radio interview with a couple of scientists on the Promise 2010 programme, including Prof Giovannoni.

Ian

<shortened url>

That seems to be the case. Despite ordering an MRI for Kim's last appt., Sriram said that it doesn't seem to be a very good predictor of illness or progression. Personnally, I don't know enough about MRI to have an opinion. I prefer to have opinions when I have a basis for having one. Ken

_________________
My Starting Point
Understanding MS 101: Doctor Talk and People Talk<br /><br />

Ian...
you are an elder!
Dude, learn some code.
(I'm a complete techno dufus,
and I learned. It's not hard)
http://www.thisisms.com/ftopict-5284.html
scroll down 1/2 way for help.

dignan...thanks for your 2 bits.
AC

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Obviously there isn't a right or wrong answer (that we are aware of) but your opinion is what I had been seeking
Bob