Effectiveness of MS drugs

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

Postby JoyIsMyStrength » Thu Jul 08, 2010 3:46 pm

Aw c'mon Marc, I've never yet been on a forum that didn't have some of this going on. I hope you'll still chime in because when you voice your opposing opinion, you do so with grace and respect. Maybe if you hang out with us some more, your example will rub off. One can only hope.

Anyway... I don't blame you for being disgusted but I hope you won't penalize those of us who appreciate your posts. This is from someone who doesn't agree with you 100% of the time. See? I can say that nicely without resorting to, well, you know.

Pam
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Postby cheerleader » Thu Jul 08, 2010 6:19 pm

Marc is right... It's really sad to see this forum, which was once a place of thoughtful discussions and dialogue, devolve into petty arguments. Granted, when we started talking about Dr. Zamboni back in the dark ages, we were just looking at his research and trying to put the vascular pieces together. There was back and forth, and nay-saying and some incredulity, but it felt like it was doing something. Or at least, it seemed that way. Not just broken record yo' Mammas.

My husband has three stents in his neck...so, obviously, we drank the CCSVI cool aid. He's a believer. He doesn't post about it online, but he's in NYC talking about it right now. He's in 100+ heat, running around the city, and proud to tell anyone who'll listen that life is different now. But he's an anecdote, and he knows that.

Dr. Embry's article is a good one, but Marc's right, it doesn't address how CRABs stop exacerbations. Jeff is still on copaxone (albeit a much lower dosage since the AAN report) because his first flare up created a lot of damage. He doesn't want another exacerbation. I don't blame him. If copaxone is helping him not relapse, and his opened veins are ridding him of venous insufficiency and all that came with that (fatigue/spasms/heat intolerance/urgent bladder) than it's a win-win. Even Dr. Zamboni suggests that patients remain on their DMDs...because we just don't know what we just don't know. And Dr. Zamboni isn't getting any $ from pharma, you can trust me on that :)

I hope Marc sticks around, because he's got a balanced outlook, and he understands MS better than almost anyone I've read (well, there's also Marie, Dom, dignan, NHE, Cure, Shayk and Jimmy, maybe--it's a tie) And unlike me and Bob, he lives it. That gives him street cred, in my book...

Please go back and read threads from the olden days (like page 53)...I've tried posting them, but they get buried really fast and I end up self-posting a nd looking like a dork. Just get a flavor of how things used to be, before the CTV program. It was respectful, curious, lots of links to research papers, and there was a sense that we were working together. That didn't mean without skepticism, but maybe because of it. We had to get our sh%t together, because we knew it was important.
love and peace and health for all peoples---
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Cece » Thu Jul 08, 2010 7:01 pm

Another option is to just hang in the Dr. Sclafani thread, he doesn't take much nonsense from the naysayers....
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby jackiejay » Thu Jul 08, 2010 7:10 pm

Thanks Cheerleader and Marc for explaining to me Ashton Embry's article. It gets very confusing sometimes when all this info comes out....but you guys are able to calmly explain all the facts in a rational manner. I am sure that I am not the only one who skip through just to see your postings....Please keep on explaining.....it is appreciated by many, I'm sure. Thanks again.

jackiejay
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Postby elyse_peace » Thu Jul 08, 2010 7:32 pm

Marc -
I also greatly enjoy your posts. I find your thoughtful contributions are helpful toward understanding. I cannot fault you for leaving the room when things get rude and boisterous I hope you can reconsider leaving permanently.
I have only been here since november, but I have developed a "taste" for certain contributions. Yours are some. Thank you. :)
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Postby MaggieMae » Thu Jul 08, 2010 7:54 pm

When I read that of the 1500 plus, there are many who have not seen improvement, I also have to wonder (from what I have read on this forum) how many of those could possibly have veins involved that were not tested or treated; how many did not have what is now found to be the gold standard for testing; etc. There is much to learn and I hope that as this treatment improves, the percentage of those who find improvements will also increase.
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Postby Cece » Thu Jul 08, 2010 7:58 pm

We've seen three cases of May Thurner in the last three weeks, when before that was not on the radar at all and would've been missed and lessened that person's chances at improvements!
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby muse » Thu Jul 08, 2010 8:53 pm

The interv. Radiologist who did my angio opened up a stenosis in the subclavian vein of another CCSVI-patient. Actually that was the first time I heard about dilatation of that vein or others than the V. jugularis & azygos. Yes, there is still a lot to learn.
Best
Arne
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Postby costumenastional » Fri Jul 09, 2010 2:29 am

I am kind of high jacking this thread but it wont be a first so...

I dont really appreciate the drama in here. It was a free world last time i checked. And while some of us belong to the funny pages (as someone stated) i really cant see any harm. Not to mention the ironic tone kind of hidden between the lines of some posts.

There are people who contribute a great deal, no doubts. There are others who dont (myself included). So?
Everyone can interact as their personality dictates. That's only normal. After all, this is a forum, not a church.

And i am positive that most of us are capable of filtering useful stuff from trash. Criticizing everything is not the way to go. Expecting everything to be perfect and always to the point is just not realistic.

And of course, having SOME knowledge above the average doesnt automatically put one to the CCSVI specialists list. Simply because there isn't one worldwide just yet.

All in all, if someone thinks he belongs in another, special cast, he should stop posting here altogether. After all, ALL of us know a thing or two about everything concerning MS or whatever is what we are suffering from. Having trouble to communicate them (there is a language barrier in many cases) doesnt mean that only a handful of people should post. We are all together in this and believe me when i say that this is the only thing we have in common. So, let's stick to that cause everything else just don't really matter.

Finally there is something very important that some of us should have in mind:
Having been reading all kinds of papers surely is a good thing. But when we are talking MS, nothing is to be taken for granted. Food for thought, sure. But even "specialists" in this field are practicing based on experience and not actual, proven science. Where does this put US ignorant poor patients? So please, spare us the drama. Say what you have to say, share what you wish to share and that's all there is to it.

All this wasnt addressing to Cheerleader. She always knows how to keep the balance and she has my respect for this also, along with everything else.
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Postby MrSuccess » Fri Jul 09, 2010 7:50 am

key word - courtesy of Costumenastional - is filter

I am disapointed at the ' so long cruel world ' post by someone who I thought was way above such displays of drama ......... :twisted:

Using the Internet for information ..... requires one to use a HUGE bullshit filter . :idea:

It's an acquired skill . :wink:





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Postby BooBear » Fri Jul 09, 2010 8:53 am

I will try one feeble attempt to redirect to the original topic of this thread.

The point was that there are now three independent long-term studies that indicate (with scientific evidence) that the CRABS are no more effective at slowing progression than taking nothing at all.

The standard measurement for disease progression has been lesions and relapses. I can say from personal experience that I have had new lesions without relapses. I have the MRIs to show such.

If there is no statistical difference in progression to an EDSS 6 score between those on the CRABS and those not, that is an incredible revelation that needs (and deserves) attention.

LDN may be an answer, antibiotics may be the answer, whatever- but I think we have evidence in these studies that indicate that CRABS are not the answer.
Three veins angioplastied.  One renewed life.  
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MS Drugs and People With MS

Postby MarkW » Fri Jul 09, 2010 3:42 pm

I realise that the 'group think' on the chatroom is that all MS drugs are the work of big bad pharma whose only purpose is to make money from poor sick pwMS. However as there are some who actually think about MS drugs here is some information:

MS drugs (CRABS), Tysabri etc work for some people. In real clinical situations the interferons work well on about one third of pwMS. No one can predict if you are one of the people who will be helped by interferon until you use the drug for 1-2 years. There are no tests available.

Other people on interferons see little benefit and some experience significant side effects. No predictability about this. A neuro may tell you this, some will not.

This info really impacts results from clinical trials. PwMS are not a homogenius population so pooling results and large studies usually find that MS drugs are on average of little benefit. This is why I find Ashton Embry's posting misleading for people who have not studied MS in depth.

My guess is that CCSVI therapy could be like MS drugs - it will work for some people but not everyone. If I had free choice of therapies I would have CCSVI and Tysabri (I live in the UK and Tysabri is not allowed unless you are progressing rapidly).

If you have CCSVI therapy please do not be mislead by immediate changes in your condition or if you have none. MS shows enormous variations so you will only get an indication if CCSVI is working for you in 6-12 months.

For those in group think mode I guess you will say I am big bad pharma. I have studied MS drugs and the disease in reasonable detail for the past 7 years (I stopped working then), so know a little.

Have CCSVI done, use an MS drug - they may work for you. No one can predict yes or no. Life is tough - we have MS.

Kind regards,
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Postby JoyIsMyStrength » Fri Jul 09, 2010 4:54 pm

Great post, Mark. The CRABs were ineffective for me x5 years but I have a friend with MS who actually feels a significant difference (a decline) when she goes off her Copaxone. There is just no generalizing this stuff. I don't think you're "big pharma," I think you sound like a reasonable guy. Thanks for sharing.

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Postby JCB » Fri Jul 09, 2010 9:25 pm

I was diagnosed PPMS, and immediately put on Copaxone. Have my symptoms progressed? You bet. Has Copaxone slowed the progression? Don't know. Am I going to stop taking my daily injection? No way. We (including the Neurologists) just don't know what we don't know. I am hoping, like all of us here, that CCSVI will help us all. I think it will help many, but probably not all. Just like the CRABs.

I find myself daydreaming about playing tennis, taking long walks with my wife, racing my bike like I used to. I have to stop myself, because when CCSVI came on the horizon I was elated to think that even if it stopped the progression of this monster I would be happy. Now I want it all back. It's kind of like money too much is never enough.

I do believe that CCSVI is a major part of this puzzle (and yes I am on waiting lists). I also believe that what we know about MS and how it is treated and classified is going to change dramatically. The great thing about the digital age is that in the future we will be able to pull up these old posts and laugh at ourselves. I usually find that I wasn't as smart as I thunk I was.
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Re: MS Drugs and People With MS

Postby L » Sat Jul 10, 2010 3:44 am

MarkW wrote:Other people on interferons see little benefit and some experience significant side effects. No predictability about this. A neuro may tell you this, some will not.


A recent study found that, in the mouse model, beta interferon made one subset better but actually made another worse.
http://www.medicinenet.com/script/main/art.asp?articlekey=114947
A blood test has been developed to work out which group will benefit from the drug.

Also, there was a study which showed that, in the short term, the poor mice did well with it but, in the long term, beta interferon was found to promote demyelination
http://www3.interscience.wiley.com/journal/70001594/abstract?CRETRY=1&SRETRY=0

Perhaps these findings translate to humans.
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