Effectiveness of MS drugs

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

Effectiveness of MS drugs

Postby Direct-MS » Thu Jul 08, 2010 8:59 am

For an analysis of the effectiveness of the CRAB drugs for slowing progression see http://www.facebook.com/l/54253dJIv3jUN ... om/25jrtmk
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Thanks

Postby Gordon » Thu Jul 08, 2010 9:58 am

Thanks so much Dr. Embry
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Postby sbr487 » Thu Jul 08, 2010 10:01 am

Effectiveness is one thing but what about the side effects?
Isn't suppressing immunity harmful?
What are the implications of doing that long term?

Is it possible that people without drugs might probably do better than people with drugs?
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Postby Rokkit » Thu Jul 08, 2010 10:09 am

Another fabulous analysis by Ashton Embry. I love that guy.
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Postby BooBear » Thu Jul 08, 2010 10:55 am

Incredible.
Three veins angioplastied.  One renewed life.  
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Postby Lyon » Thu Jul 08, 2010 11:04 am

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Last edited by Lyon on Sun Nov 20, 2011 8:02 pm, edited 1 time in total.
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Postby fernando » Thu Jul 08, 2010 11:35 am

Lyon,

May I suggest you something?

Could it be a good idea to add a footer to all of your posts saying something like:

"CCSVI is not proven."
"There are no legitimate study reports stating that angioplasty is beneficial."

I think you get the idea. I mean all of your replies revolve around two or three points that you repeat over and over again.

Next time you just only need to hit the reply and submit buttons, no additional effort! Big gain, think about it.
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Postby Vhoenecke » Thu Jul 08, 2010 11:43 am

A lady from Calgary phoned me to get information on the angioplasty treatment. She told me she was just diagnosed with Thyroid cancer and feels it was caused by the MS drugs. I agree with her. Can't remember if it was rebif, Beta, or avonex that she was on. Not really impressive, now they are dragging their heals on Cancer surgery due to holiday time and the or being on light duty. I told her to get her husband to phone the surgeon and get on it or go to Mayo clinic and get it done now. How ridiculous is our system in this country. We need to get MSers off these drugs and onto LDN.

Val
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Postby thornyrose76 » Thu Jul 08, 2010 12:51 pm

I was told by a nurse here at the Winnipeg MS clinic that the "MS drugs aren't as effective as we initially first believed."
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Postby Lyon » Thu Jul 08, 2010 12:56 pm

.
Last edited by Lyon on Sun Nov 20, 2011 8:02 pm, edited 1 time in total.
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Re: Effectiveness of MS drugs

Postby IHateMS » Thu Jul 08, 2010 1:56 pm

Direct-MS wrote:For an analysis of the effectiveness of the CRAB drugs for slowing progression see http://www.facebook.com/l/54253dJIv3jUN ... om/25jrtmk


so should we stop them?

I never thought these injections were doing anything but giving us false hope

lets see 12 months x $3,000/month x 12 years = $432,000 plus pain and suffering...........

fraud
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Postby tazbo » Thu Jul 08, 2010 2:03 pm

Subtle hints, direct complaints, requests to moderators, can't stop the compulsive actions of those driven by the need of self-gratification of a condition that craves the need to obsess over people who because they open their hearts to a common interest on a cruel disease, must endure the added cruelty of a few driven individuals who pretend they are trying to ensure everyone gets their "helpful" opinions to consider as they pretend to wait along with us for some respite in our condition.
Truly a case study in and of itself. What really motivates this kind of person?
Well I will do as most of us do and just watch thread after thread get banged on and tainted beyond usefulness as the obsessed few entertain and enlighten just the few who have clubbed together.
Enjoy yourselves and bash away.
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Postby thornyrose76 » Thu Jul 08, 2010 2:07 pm

Grow up.
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Postby Lyon » Thu Jul 08, 2010 2:40 pm

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Last edited by Lyon on Sun Nov 20, 2011 8:00 pm, edited 1 time in total.
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Postby marcstck » Thu Jul 08, 2010 3:25 pm

Sad to see how much this forum has devolved into an us vs. them, let's club each other over the head war zone. This may wind up being one of my last contributions here. Both sides need to ratchet it back a bit, and allow rationality rather than emotionality to rule the day and the discourse. Very few things in life are black-and-white, including the issue of CCSVI. The hypothesis is likely to prove neither the hoax that its most ardent detractors would make it out to be, nor the panacea that those most enamored with it wish it to become.

As for Dr. Embry's paper, just a few comments. While the crab drugs most probably do not slow progression (and many mainstream neurologists have been admitting this for quite some time now), to say they are worthless overstates things a bit. The fact is, they do reduce relapse rates, which does improve the quality of life for patients with Relapsing Remitting Multiple Sclerosis. While an improvement in quality of life might be less than was hoped for, it is still of considerable benefit to those afflicted with the disease. Certainly the drugs have been overhyped, and overpriced, but patients who had been experiencing four or five relapses a year before being put on one of the DMD's, and only one or two after, would argue that their taking the drug hasn't been without value.

I'd also quibble with Dr. Embry's contention that the liberation procedure has benefited "almost every one of the 1500+ patients that have had it". From personal experience, and contacts I've had with those who have undergone the procedure, through my blog and in "real life", a substantial percentage of those who have undergone liberation have failed to see significant benefit. What the percentages of those benefiting vs. those not benefiting is unknown, since the vast majority of the 1500+ have not been tracked in any way. We've actually only heard from several dozen of those 1500+, and predictably, those who have reported most fervently are the ones who have seen dramatic results. It's understandable that those who haven't would be much quieter about their experiences.

I'm excluding myself from these calculations, because even though I did undergo the procedure, my blockages were unable to be addressed. Once again, I'll remind everybody that I am a CCSVI advocate, who believes that the hypothesis will prove be a major part in the MS puzzle. I don't think it's the whole story, but it's at least a few vital chapters.

With that, I'll likely take my leave from this place. See you in the funny pages...
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