This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi.

At what cost? I don't mean in gold.

Cyclophosphamide is a mutagen. How can we know that it won't cause cancer? And how do we know that it will really work? It should! It kills the bad immune system.

Why do immune compromised people with AIDS do suffer relapses? HIV is more potent an immunosuppressor than cyclophosphamide.

Why is there no immune system involvement in 30-40% of MS lesions?

Why do relapses tend to happen when the immune system is in a really bad shape?

Steroids relieve from many of the symptoms without affecting the course of the disease at all. How can we know that a cyclophosphamide-indecued MS parenthesis will affect the long term course of the disease?

I agree. Live for today! But why get a drug with nasty side effects that MAY work, without knowing if, why and how? Sincerely, there is almost nothing that can be done for MS by the medical community in the long term. And there is no such a thing like an "MS specialist".

My opinion is that the natural approach (diet, supplements etc) is much closer to the cause than anything else. What we need is plenty of luck.

sou

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Shortest joke: "We may not be able to cure MS but we can manage its symptoms."

Hi sou,
We've all gone through this many times and there are a growing percentage of people who obviously believe that the cost of NOT doing something aggressive about MS is the unacceptable cost (which pretty much covers the use of Tysabri, Rituxan, Campath or Revimmune).

As part of an even more aggressive cancer therapy, Cyclophosphamide at high dose has a long history with an "acceptable" safety record.

That's an incorrect statement in a situation in which correctness is essential. Cyclophosphamide is capable of total ablation, and total ablation is, of course the goal in rebooting and total ablation defines the ENTIRE difference in the situations you mention.

Please provide reason to believe that statement is true.

NOTHING is certain in the world of MS but to the majority of people who do believe that MS involves the immune system, MS treatment has always seemed a delicate conundrum regarding

"is it more sensible to promote a healthy immune system, or does that only promote it more effectively attacking "self?"

"is it more sensible to suppress the immune system so that it is only able to lodge a weaker attack on "self?"

As it happens, the choice is made for us in that we are much better able to suppress the immune system than strengthen it so suppression is where our treatment options have lain.

While rebooting seems to have separated itself greatly from other treatments in showing marked and obvious changes in the course of the disease, there is no getting around the fact that time is the judge and no one, including myself, can truthfully say that rebooting will forever stop the disease process.

What is certain is that the clock continues to click and there are an increasing number of people many years out on Revimmune and Campath who, rather than losing function are gaining it.

Bob

To answer Robbie: I just had an MRI on the 5th of February. The new lesion that popped up has healed and is gone, and numerous other lesions in my brain are healing as well. It looks like the Copaxone did reteach my naive immune system to handle a reactivation and how to resolve the issue. The biggest issue we think may be the lack of PT. On March 3rd I start PT 3x per week on land and hydro for 6 months. It is focusing on Truncal tone and Gait retraining. See I gave up when I saw that little lesion. I didn't realize some people pop of a lesion or two after the treatment but the body fixes the issue. We are seriously hoping in 6 months of hard therapy I will get more back. Most of us have not started any PT. It's our own fault because even people who suffer strokes start PT immediately they able which helps to start rehab. Maybe now that I am putting more into it I will get more back.

The first people to have HiCy was in the 1970's for diseases with a much much worse immune system component than MS. I am happy to say those people are still alive and well so I see no reason to think I won't be. My family line is all around 80-100 and God tells me there is no reason to worry. The pulsed versions of chemo that stay in your system for a long period do scare me just because they sit and eat at you for months at a time. That can't be good but I just don't know.

Hi Lyon.

Here are 2 references I have found so far that support my claims:

http://jrsm.rsmjournals.com/cgi/reprint/98/7/303

http://www.rcpe.ac.uk/journal/issue/jou ... _of_MS.pdf

I hope this thing does not get too personal. For me it is a democratic conversation.

Thanks,

sou

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Shortest joke: "We may not be able to cure MS but we can manage its symptoms."

I know it does, but it shouldn't EVER get personal since there aren't any PROVABLE right or wrong answers.
Bob

I see in the second reference paper from sou that the authors refer to vitamin D --

"The gene expression in MS is influenced by external factors, and whilst such factors have not been identified with certainty, one of these is likely to be the influence of sunlight, perhaps mediated through vitamin D metabolism."

Something so simple could make a difference??

I understand the frustration of waiting. I think we all do.

I supposed part of it has to do with how we wait. What I mean is (and I just watched Hell's Kitchen last night), if you're at a restaurant and you're waiting for your food you might start getting frustrated and increasingly upset with the wait staff -or- you might have an intensely deep and meaningful conversation with your dinner partner.

Extrapolate that from an hour to a decade.

I know it's not fair to compare dinner with a cure, but that's not really the point I'm trying to make. Nor am I trying to say we need to be patient. But if you've ever baked anything, you can really ruin the experience by watching the oven like it's a microwave. Just let the darn thing bake and find something else constuctive and worthwhile to do.

Stop wanting it so bad? No, that's not what I'm saying. I'm saying, don't throw your arms up in disgust and pout about it. The Apostles thought Jesus was coming back right away - we wouldn't have Christianity if everyone gave up 2,000 years ago.

Like everyone else here, I don't have a clue when the cure is coming (and I'll refrain from getting off the topic) but I do read a lot of medical journal articles. If you want to get a sense of how much effort is going into MS, use Google Scholar to check on MS and after you've read all the articles that come up, then we'll talk. The system is not perfect, but the system is working. Ken

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

Thanks for the article on muscular dystrophy, Kitty. For someone who was just ditching the hope train, you've dug up some hope inducing research!! A cure for muscular dystrophy with genetic therapy-



I've been banging the nitric oxide drum in relation to MS for awhile now. If NO distribution is thrown off, endothelial disease results. Glad to see how researchers how found the link between dystrophin and NO. Thanks, Kitty!
AC

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